(no subject)
OK, so at least a few of you are feeling similarly to me.
I think I will be shutting down this blog, but not before I tell you what's really happening in my life. I've admitted to some of it in locked posts, while other parts I've remained completely mum about. To those of you that have been following me for years, I really appreciate all of the input and feedback you've given me over that time. For some silly reason I guess I feel like making some sort of a conclusion, as if this was some kind of linear story, which it obviously isn't.
But, this is where I am today. I look at so many friends, both from vet school and from other realms of my life, and they are almost all married with children. That was once what I thought I was aiming for, but it just doesn't seem to be in the cards for me.
My husband has a dominantly inherited movement disorder. It has incomplete penetrance, so while many of his family members display symptoms, for some reason his is a lot worse than most and causes him a lot of pain. Understandably, he doesn't want to pass this on. We still don't even really know for sure what it is. He continues to undergo testing to understand further what this is and whether there are further treatments he could be receiving for it. As things stand, he takes Sinemet, which is usually prescribed for Parkinson's. It does help, but not as much as is typical for conventional dopa-responsive dystonia.
After e-mailing researchers literally all over the world, one of my appeals was forwarded from a group in Switzerland to a pediatric neurologist here in San Diego. She is an expert on DRD and emailed me back. She offered to see Brian and conduct further testing, so we finally have a neurologist who actually cares about characterizing this further (Brian's previous neurologist just didn't seem that interested in working him up for some reason). Brian underwent a spinal tap on Tuesday to try to quantitate his neurotransmitter levels in his CSF because there seems to be some confusion as to whether this is really a central or a peripheral disorder. It's just not clear.
My wonderful boss has offered to do whole genome sequencing on Brian if it comes to that. We have the capability here at my lab, although for ethical reasons I would need to hand it off to someone else to do the preps. However, I told him that I wanted to see whether specific testing gave us any sort of clue before we pursue that first.
In the meantime, I think I mentioned my in-laws are in a financial disaster and moved in with us last year. And now I am trying to figure out how to help them out of their own debts while managing their mounting medical bills, all while attempting to figure out a way to save for our own retirement AND get my student loans from vet school paid down.
Needless to say, the thought of children just seems downright irresponsible at this point. We wouldn't be able to afford it.
I didn't even realize how depressed I was about all of this until about a week ago when I just randomly burst into tears in front of Brian. We don't get a whole lot of alone time together any more, but I begged him to please take me to dinner so we could hang out, and admittedly I don't think it was the most pleasant date we've had in a long time because all I could do was anxiously mull over all of these things. This is, of course, not helpful to him because stress makes his condition even worse, and he was off of his meds in preparation for his spinal tap.
I've been carrying all of this around with me for some time, and at one point I thought I was strong enough to bear it all, but I am beginning to question whether that is really true. I am beginning to feel like I am buckling under the weight of it all. And let's be honest -- this is not as hard on me as it is on Brian. He seems to be handling it a lot better than I am.
But as I told him, all those things I thought I wanted out of life -- I feel as though they are passing me by. The window of opportunity is closing, and there is practically nothing I can do about it. And as a result, I am kinda miserable.
So there you go -- the brutal truth.
I have always believed that things happen for a reason, and even now I don't question it. But, when you're too depressed to steer your life in the direction you really want it to go, you have to recognize that you're in trouble. And, I think I am. I no longer feel in control of what is happening to me or my family, and it scares me.
The last few years I received several hard blows to make me recognize that the world does not revolve around me. I answered in kind and told God I finally recognized that, and I worked very hard to be the unselfish wife. I owed it to Brian after all the support he gave me through vet school and prior to that, especially considering I wasn't a particularly good spouse to him during that time period. However, there is a line between being unselfish and losing your sense of self entirely.
So, let me pass on some learned wisdom to those of you that read this. Don't ever give up so much of yourself that there's nothing left. One day you'll find that you regret it. I am still young, relatively speaking, but I don't see a bright future ahead of me. In fact, I can't really see anything up ahead any more. I don't know where I'm going. I can only take it day by day and put one foot in front of the other in an effort to find myself again.
I think I will be shutting down this blog, but not before I tell you what's really happening in my life. I've admitted to some of it in locked posts, while other parts I've remained completely mum about. To those of you that have been following me for years, I really appreciate all of the input and feedback you've given me over that time. For some silly reason I guess I feel like making some sort of a conclusion, as if this was some kind of linear story, which it obviously isn't.
But, this is where I am today. I look at so many friends, both from vet school and from other realms of my life, and they are almost all married with children. That was once what I thought I was aiming for, but it just doesn't seem to be in the cards for me.
My husband has a dominantly inherited movement disorder. It has incomplete penetrance, so while many of his family members display symptoms, for some reason his is a lot worse than most and causes him a lot of pain. Understandably, he doesn't want to pass this on. We still don't even really know for sure what it is. He continues to undergo testing to understand further what this is and whether there are further treatments he could be receiving for it. As things stand, he takes Sinemet, which is usually prescribed for Parkinson's. It does help, but not as much as is typical for conventional dopa-responsive dystonia.
After e-mailing researchers literally all over the world, one of my appeals was forwarded from a group in Switzerland to a pediatric neurologist here in San Diego. She is an expert on DRD and emailed me back. She offered to see Brian and conduct further testing, so we finally have a neurologist who actually cares about characterizing this further (Brian's previous neurologist just didn't seem that interested in working him up for some reason). Brian underwent a spinal tap on Tuesday to try to quantitate his neurotransmitter levels in his CSF because there seems to be some confusion as to whether this is really a central or a peripheral disorder. It's just not clear.
My wonderful boss has offered to do whole genome sequencing on Brian if it comes to that. We have the capability here at my lab, although for ethical reasons I would need to hand it off to someone else to do the preps. However, I told him that I wanted to see whether specific testing gave us any sort of clue before we pursue that first.
In the meantime, I think I mentioned my in-laws are in a financial disaster and moved in with us last year. And now I am trying to figure out how to help them out of their own debts while managing their mounting medical bills, all while attempting to figure out a way to save for our own retirement AND get my student loans from vet school paid down.
Needless to say, the thought of children just seems downright irresponsible at this point. We wouldn't be able to afford it.
I didn't even realize how depressed I was about all of this until about a week ago when I just randomly burst into tears in front of Brian. We don't get a whole lot of alone time together any more, but I begged him to please take me to dinner so we could hang out, and admittedly I don't think it was the most pleasant date we've had in a long time because all I could do was anxiously mull over all of these things. This is, of course, not helpful to him because stress makes his condition even worse, and he was off of his meds in preparation for his spinal tap.
I've been carrying all of this around with me for some time, and at one point I thought I was strong enough to bear it all, but I am beginning to question whether that is really true. I am beginning to feel like I am buckling under the weight of it all. And let's be honest -- this is not as hard on me as it is on Brian. He seems to be handling it a lot better than I am.
But as I told him, all those things I thought I wanted out of life -- I feel as though they are passing me by. The window of opportunity is closing, and there is practically nothing I can do about it. And as a result, I am kinda miserable.
So there you go -- the brutal truth.
I have always believed that things happen for a reason, and even now I don't question it. But, when you're too depressed to steer your life in the direction you really want it to go, you have to recognize that you're in trouble. And, I think I am. I no longer feel in control of what is happening to me or my family, and it scares me.
The last few years I received several hard blows to make me recognize that the world does not revolve around me. I answered in kind and told God I finally recognized that, and I worked very hard to be the unselfish wife. I owed it to Brian after all the support he gave me through vet school and prior to that, especially considering I wasn't a particularly good spouse to him during that time period. However, there is a line between being unselfish and losing your sense of self entirely.
So, let me pass on some learned wisdom to those of you that read this. Don't ever give up so much of yourself that there's nothing left. One day you'll find that you regret it. I am still young, relatively speaking, but I don't see a bright future ahead of me. In fact, I can't really see anything up ahead any more. I don't know where I'm going. I can only take it day by day and put one foot in front of the other in an effort to find myself again.