But it does bring up an issue again. Babies! Yay... there is a choice. And I never think of it because we're just nowhere near the point of having them, but should we even? Why? Why not? We should make a list sometime. As far as now goes, my doctor asked us last visit if we had talked about having kids yet. He said "sooner rather than later" and said the absolute cut-off would be 35 years old. So I have 11 years to think about it.
Friday, October 23, 2015
Pills
That is what I would dislike the most about PKD. I assume. From what I know. It bothers me well over enough that I have to take 4 pills a day for my mental health (and I'm supposed to be taking 5). And this lady has a makeup bag full of medicine. Not my cup of tea, thanks.
Tuesday, October 20, 2015
2-year Diagnosis Anniversary
It's a bit late! Oops!
But that's how little I think of it now. It's just a thing that pops up every now and then. I follow the PKD Foundation on Facebook and there are some neat posts I share every once in awhile, but I'm not digging for information anymore - I know pretty much all there is to know. I'm not in any support groups (they're a nonsensical, colossal waste of time). Back pain is common, but not debilitating.
In fact, I don't get UTIs nearly as often anymore. It used to be a 3+ times a year thing and now it's like...once a year. Last year there was only one...and it was on my anniversary. Yay.
There is just no point in freaking out. And I think what freaked me out the most is not knowing things. Sure, I mourned the high probability of looking pregnant in the decades to come. I flipped every time I got a headache. But now I've accepted my genes. What good would it do not to? It's unlike a lot of PKD patients. Many of them - at least the ones in support groups - are profoundly uneducated (about their OWN BODIES! I'll never understand). Many of them worry far too much and drastically alter their diets to try to prevent progression, even though most of these changes are proven to be ineffective.
And they're just on the group every day praying it away and wishing others well and hoping their kids don't have it. And they're allergic to being frank about things. Facts. They just cling to "hope" and worry their little minds into psychosis.
Yes, it's a serious disease. Yes, it SUCKS not knowing what PKD deck you've been dealt. I'm sure it's difficult dealing with passing it on to progeny, but you just have to let it happen. You're stuck in that body, and it's gonna do what it's gonna do. Medicine seems to be catching up. There is finally a treatment to slow cyst growth available in a handful of countries (not the USA still...). And, while there are still plenty of us who die of aneurysms, heart disease, and infection, and plenty of us living every day with immense pain, mental anguish, and horrifying bodies, it could be worse.
I, for one, am happy it's not something like cystic fibrosis or Huntington's disease. Our friend's wife has cystic fibrosis. She's always in the hospital and she has a difficult time breathing. Her life will likely be MUCH shorter than mine, and it will have sucked (medically) the whole time. My life may be shortened or not. I get to live a relatively normal life until my 30's. My issues will deal with peeing, not breathing. I can feel horrific, exhausted, and in a world of pain, but she will never know what it's like to feel normal. Kidney transplants often fail, but lung transplants fail 50% of the time.
And Huntington's is also progressive, but much more horrifying than PKD. I just think it's far scarier to lose your cognition and descend into mental illness over time. Not to mention losing control of your body movements. That's just a sad, sad thing.
Anyway, that's a rant. And I realize I have no idea what's ahead of me. Maybe everyone's fear and complaining is warranted. Most people have a family history, after all. And some of the ones I've read of are pretty tragic. Especially brain aneurysms in little kids. Some people say they "wouldn't wish it on [their] worst enemy".
So I don't really know how bad PKD is, but why should I worry?
Cheers to another year of pretty good health!
But that's how little I think of it now. It's just a thing that pops up every now and then. I follow the PKD Foundation on Facebook and there are some neat posts I share every once in awhile, but I'm not digging for information anymore - I know pretty much all there is to know. I'm not in any support groups (they're a nonsensical, colossal waste of time). Back pain is common, but not debilitating.
In fact, I don't get UTIs nearly as often anymore. It used to be a 3+ times a year thing and now it's like...once a year. Last year there was only one...and it was on my anniversary. Yay.
There is just no point in freaking out. And I think what freaked me out the most is not knowing things. Sure, I mourned the high probability of looking pregnant in the decades to come. I flipped every time I got a headache. But now I've accepted my genes. What good would it do not to? It's unlike a lot of PKD patients. Many of them - at least the ones in support groups - are profoundly uneducated (about their OWN BODIES! I'll never understand). Many of them worry far too much and drastically alter their diets to try to prevent progression, even though most of these changes are proven to be ineffective.
And they're just on the group every day praying it away and wishing others well and hoping their kids don't have it. And they're allergic to being frank about things. Facts. They just cling to "hope" and worry their little minds into psychosis.
Yes, it's a serious disease. Yes, it SUCKS not knowing what PKD deck you've been dealt. I'm sure it's difficult dealing with passing it on to progeny, but you just have to let it happen. You're stuck in that body, and it's gonna do what it's gonna do. Medicine seems to be catching up. There is finally a treatment to slow cyst growth available in a handful of countries (not the USA still...). And, while there are still plenty of us who die of aneurysms, heart disease, and infection, and plenty of us living every day with immense pain, mental anguish, and horrifying bodies, it could be worse.
I, for one, am happy it's not something like cystic fibrosis or Huntington's disease. Our friend's wife has cystic fibrosis. She's always in the hospital and she has a difficult time breathing. Her life will likely be MUCH shorter than mine, and it will have sucked (medically) the whole time. My life may be shortened or not. I get to live a relatively normal life until my 30's. My issues will deal with peeing, not breathing. I can feel horrific, exhausted, and in a world of pain, but she will never know what it's like to feel normal. Kidney transplants often fail, but lung transplants fail 50% of the time.
And Huntington's is also progressive, but much more horrifying than PKD. I just think it's far scarier to lose your cognition and descend into mental illness over time. Not to mention losing control of your body movements. That's just a sad, sad thing.
Anyway, that's a rant. And I realize I have no idea what's ahead of me. Maybe everyone's fear and complaining is warranted. Most people have a family history, after all. And some of the ones I've read of are pretty tragic. Especially brain aneurysms in little kids. Some people say they "wouldn't wish it on [their] worst enemy".
So I don't really know how bad PKD is, but why should I worry?
Cheers to another year of pretty good health!
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