I have chronic cluster headaches and an eeny little AVM in my head. It hurts more than childbirth and I have them somewhere between a couple times a month and a couple times a day. The AVM will probably kill me because the medical technology isn’t at the point right now to where it can be zapped out. They can see it, which is a major improvement. The dead part isn’t a happy choice though.
It’s funny, the way technology works. I had some kind of test two or three years ago and found out that I had four heart murmurs. My mother had a fit because IF I had them, don’t you think she would know? Well, nope. I’d never had that particular test before because it didn’t exist.
There is a chance that I’ll live long enough that the surgery will be invented and this little kink inside my head can be zapped out while I listen to The Way You Make Me Feel. (And I’m sorry I was such a harsh judge of Michael Jackson, whom I didn’t know and I put him on the same list as Woody Allen. I was wrong. I know what it is like to be unfairly judged and it HURTS So that’s my CD of choice for the start of surgery. I bet you didn’t know that you could do that, did you? I’m not sure that they keep your music on during the whole thing, but you get to go to sleep with it on and that’s about all that really matters. The next time I get a picc line, I’m making a mix of music I can hum to, because you are AWAKE for this whole very scary procedure and I think it would help if I could hum. Although if I sang along, I bet they would knock me out and I’d miss the whole terrifying experience.)
What I do know for sure is that this is a journey I need to take alone. I can suffer much better by myself than I can watch my loved ones watch me suffer.
We both have chronic insomnia and that is worse than any chronic illnesses, in my opinion. I can manage to not sleep for three days in a row–no naps, either–and by the fourth night, I can eventually fall asleep and wake up with a headache. I think maybe the insomnia and the clusters are somehow connected Darling has the kind where he can GO to sleep but will wake up around one or four. I can’t fall asleep at all and end up wandering around the house and worrying my dogs to no end.
My husband had a stroke a month ago. Strokes are funny things. If it is not a huge one, which shows up on the MRI as this huge black splotch in your brain. A little one doesn’t show up and even–or ESPECIALLY–if the doctor tells you that since he can;t see anything on the results, therefore you didn’t have one—well that is a doctor who doesn’t know as much as I. I was there, he had one. I was there last time and yes, he had one then, too. And I’m here every day and I can tell that there are things which have changed. He is a little confused. He sometimes doesn’t remember who I am (so I tell him I’m Valerie Bertinelli, which amuses me only because he says “Horseshit. You are not.”)
His doctor also found an adrenal tumor and he had a home health care nurse four days a week. ( A friend told me just the other day that 10% of people have adrenal tumors and it’s no big deal. We’d just seen an oncologist and he seemed to think it was a very big deal. So who do I believe? My friend who is a librarian and good at putting books away or an oncologist? She’s had cancer and I doubt she went to a librarian.
He has also a couple of chronic diseases which are just chronic and one of those things. Nothing you die from because that would be too simple.
He is depressed (who wouldn’t be?) and despondent and very much concerned. Not me. All of this will work out in whatever way it is supposed to work out. I have great insurance, great doctors and a great support system. If what I need to do is retire to take care of him? Well, I’ve been seriously thinking about it. I need to have my shoulder replaced but after that, I think I’m done. I’ve been in a classroom since I was FIVE. I started subbing in 1971 and got my first contract when I was 19 (I was 20 the very next week). So I’m going to Fresno next week to sign the papers and then will just hold on to them until the day i need to turn them in. Lucky me, I’ve got a great retirement and have matched my retirement with stocks, bonds, mutual funds and savings. Yes, it was hard. But isn’t everything?
It is much easier to go through it yourself than watch your loved ones suffer. It goes both ways. I’ll gladly be doing my own suffering (I’m used to it) and suffer for him as well. He has never done anything in his life to deserve this, having a much kinder nature than I.
Appropriate thoughts for Easter. I kind of get it now.