Post # 16
jillbean1217: I’m so sorry this has all happened! As someone who deals with chronic illness, I’m eternally grateful that my SO looks past my medical history to who I am, so I know your boyfriend must feel that way for you too. It must suck sometimes to be the caretaker, but I am glad there are times it works for you.
I think Horseradish has made some great suggestions for you to follow in terms of power of attorney as well as talking to a social worker. I would definitely follow up on that. I also think you might find it helpful (if you are absolutely set on marriage, 100%) to look into whether a quick courthouse marriage would make it easier or more difficult for the two of you to get medical care.
In some ways marriage vs. committed long term relationship is hard to pin down. Ideally marriage shouldn’t change people because the commitment is there beforehand. Marriage is a legal state that acknowledges that. Getting courthouse married now for a couple hundred bucks might make life easier. Anyone who says you can’t have a wedding later is being a pearl- clutching busybody.
Post # 17
LilRhodyGem: Question: What are you doing on WeddingBee in the first place? It’s not like anyone in his right mind would want to spend his life with someone as unpleasant and bitter as you.
jillbean1217: I have no real advice that hasn’t already been mentioned. I’m sorry you’re going through this. His epilepsy will only get worse, not better.
Post # 18
To expand on my previous post, it can only be managed–not gotten rid of. Even on medication, it will still be triggered, just perhaps not as often.
Post # 19
babeba: This gave me a much needed laugh “Anyone who says you can’t have a wedding later is being a pearl- clutching busybody.” so thank you for that! I know that he appreciates everything I do for him. The thing is, he is such a good person, and it’s infuriating and frustrating and overwhelming that he has to be the one to deal with this. Even with all of his health issues, I wouldn’t want anyone else. He adores me, he treats me 100x better than anyone else I’ve ever been with. I like to be a caregiver, so it doesn’t often seem like an unneccessary burden to me, and I know that he would take care of me in the same way (and has, before, during brief illnesses).<br />
CorvusCorax: I know that it’s never going away. I think that part of my frustration right now is that he was doing so. good. so when he had such a horrible day, it was a shock back to reality for both of us.
He used to be on Dilantin, before I met him. That did absolutely nothing for him, and actually may have even made his seizures worse. He was having up to 100 grand mals a month while on this. Eventually, in 2012 he got switched to Keppra, which helped him so much. He was still having occasional episodes, and I think a grand mal every few months. However, once we got together and I started regulating his medicine more strictly, he was down to almost no symptoms. He is lucky, he has what I consider to be pretty mild epilepsy. In fact, even the doctors are surprised that he manages on such a low does of Keppra (750mg a day) and most people, from what I’ve found, are on anywhere from 1000mg-3000mg in conjunction with other meds. When he started having his episodes that effected his work back in July, I am fairly certain that it was a combination of his stress and the fact that the doctor had upped his meds to 1000mg. He wanted to get his liscence back and had had a few stress-induced episodes when he was starting his new job. They thought the higher dose would get rid of those completely, but it seemed to have the opposite effect. Now that he’s back down to the 750mg a day and completely stopped taking the painkillers, I’m hoping he evens back out.
I just wanted to tell everyone thank you for taking the time to respond (and to stick up for me a bit). I know the original post was long, but I’m verbose anyway and had a serious case of emotional word vomit. I’m new here, and it was nice to have an immediate sense of welcome.