Numb

I figured its been 2 months since I wrote, so I should update. Where to start? Since John's seizures have been more "controlled", he has started having hour long repetitive seizures about once a week. So now, instead of having 5 or more seizures a day he usually has about one a day, usually in the morning when he wakes up. Nice way to wake up right? And then one of the repetitive seizures a week.. But who knows, it could all change its pattern in a week or two.

I don't really know what to think at this point. I feel like no one can help us, and the specialist who might be able to help us, is so hard to get into... I have pretty much gotten all his doctors to call and harass them, so we should be getting a call this week, about how soon he can see the Epileptologist . He has an appointment in March, but there is no way we are going to wait that long. We will see a neurologist tomorrow, but I am not getting my hopes up.

John has been on 2 anti seizure meds and he has maxed out the doses, and is now on a third medication. Normally, if the first 2 meds fail, a third won't make a difference. So then what? I am not really sure what the doctors will do now. John and I both don't love the idea of more medications.. But, most doctors will look into figuring out if he will be a candidate for brain surgery. At this point, we would pretty much do anything for the seizures to just go away. But, I am not sure how close we are to surgery being the next option.

Some days I can't believe this is our life. I always thought I would get married, have children, and we would live happily ever after. I mean why wouldn't that happen, everyone else seems to be living the life I thought I would have. Sure, I don't know every one's problems, and I know people have way harder trials than this, I just can't help but notice those who don't. I am sorry but money problems, messy houses, being up all night with a child is NOT a big problem. What I would give if those were my ONLY problems. I never thought that my 28 year old husband would have such major health problems. I mean this isn't even the only health problem he has. He also has keratoconus, which pretty much means he is going blind in one of his eyes (there is a surgery that can fix this), along with asthma, and prehypertension. I mean seriously, when is he going to catch a break?

Lately, I have really been struggling to not compare my life to others, I am obviously doing a horrible job. I just feel really alone in this, John and I are going through this together, but its affecting both of us differently... This has changed the both of us so much. It kills me to see the bright, smiley happy guy I married slowly become this person, I barely even recognize.

Some people have asked me if his medications have made him quiet or seem different. My answer to that is HELLO he is Depressed... He is grieving the person he was, and All of his independence has been stolen from him. Everything he loved to do has been taken away. He lives in fear of having seizures constantly. We have been living in hell for the last year and a half and its starting to wear on us.

I had a break down the other week at my parents. Everyone just kept asking what can we do to help...? I just told them there's nothing you can do. Because they can't take this away. I think that's what I have been most frustrated with. No one seems to know what to do for him. I have tried to "fix" him myself, with diet, exercise, doterra oils, going to bed early, and doing anything and everything I can do for him. I have prayed 1000's of prayers, gone to the temple, fasted, and now I am just fresh out of ideas.. I just feel Numb...