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!
Tuesday, August 18, 2015
Record
This is why blogs are bad. People change and their thinking changes. Especially with therapy, I've been thinking less destructively. I hate looking back at my posts and seeing factual errors and bad attitude. But I'm keeping it up because that's the record I kept. When I wrote those things, I wrote them in my mindset at the time. I can't just pretend I was always as chill as I am now! ;)
Anyway, things have been well here. The less I think of it, the better, but even when I do think of it, it's not a big deal. It's not yet, anyway, and that's the part that matters. I've been practicing mindfullness (living in the present rather than the past or future), and it really helps. Anything could happen to any of us, so just live in the now.
Anyway, things have been well here. The less I think of it, the better, but even when I do think of it, it's not a big deal. It's not yet, anyway, and that's the part that matters. I've been practicing mindfullness (living in the present rather than the past or future), and it really helps. Anything could happen to any of us, so just live in the now.
Friday, May 8, 2015
Facing the Future
Today, after getting some teeth extracted, my husband needed to fill a prescription. Because I was due for a refill, I figured we'd both go to Rite Aid. We sent in our requests and waited for them to be filled.
While we were there, a man came and sat right next to me, with only a tiny end table between us. He first asked if we went to UVU or BYU. I told him we both went to UVU and that I was studying criminal justice and Stephen was studying history education. "Oh!" He said, smiling.
There was, of course, an awkward pause because I didn't know what to talk about next. Somehow he did.
"Do you know what this is?" He said, raising his arm from the arm rest. There was a white bandage. I noticed his arm was swollen, but I hand't realized what it was.
"It's for dialysis."
It was like I was an alien and I found another of my kind. I blurted out: "Oh! I have PKD, what do you have?" Uh...smooth.
He looked surprised and replied something along the lines of: "Nephritis." He continued to explain that he'd been on dialysis for 10 years. I asked if he'd gotten on the transplant list yet and how far he was. He explained that he wasn't on the list, that he was stage 3, and that he'd had a pig's valve implanted in his heart to replace a valve. He was "part pig". He'd had high blood pressure and congestive heart failure twice.
I was kind of in a trance state. Finally, I met someone with kidney problems. Not that they're rare, but it was just my first time seeing an older person with actual kidney issues. They were typical kidney issue issues, but I think that was useful. He got up to leave, I told him sincerely that it was nice to meet him, and he said "You too."
Just as he left is when it hit me. That's my future. That's what almost certainly will happen to me. Or at least similar things. Maybe worse things. Maybe not as bad things. But that person did me a service. He showed me what I can maybe expect.
I've heard it all before from the internet, but the "support groups" would always blather on about nothing, not really knowing anything about the disease they HAVE, and to just "keep a positive attitude". That's fine, but I want information. No one I know has had PKD before. I still don't quite know what to expect. And everyone is so different, it's not like hours of research can give much of an idea.
So this man did me a favor. It was a little disheartening, but also enlightening. He seems to be okay other than dialysis which is notorious for severely impacting quality of life. But that guy seemed alright. If he can do it, how could I not? Not that, at this point, I'd ever want to be on dialysis, but that's about the worst of it and people get through it.
I really am glad I met him.
While we were there, a man came and sat right next to me, with only a tiny end table between us. He first asked if we went to UVU or BYU. I told him we both went to UVU and that I was studying criminal justice and Stephen was studying history education. "Oh!" He said, smiling.
There was, of course, an awkward pause because I didn't know what to talk about next. Somehow he did.
"Do you know what this is?" He said, raising his arm from the arm rest. There was a white bandage. I noticed his arm was swollen, but I hand't realized what it was.
"It's for dialysis."
It was like I was an alien and I found another of my kind. I blurted out: "Oh! I have PKD, what do you have?" Uh...smooth.
He looked surprised and replied something along the lines of: "Nephritis." He continued to explain that he'd been on dialysis for 10 years. I asked if he'd gotten on the transplant list yet and how far he was. He explained that he wasn't on the list, that he was stage 3, and that he'd had a pig's valve implanted in his heart to replace a valve. He was "part pig". He'd had high blood pressure and congestive heart failure twice.
I was kind of in a trance state. Finally, I met someone with kidney problems. Not that they're rare, but it was just my first time seeing an older person with actual kidney issues. They were typical kidney issue issues, but I think that was useful. He got up to leave, I told him sincerely that it was nice to meet him, and he said "You too."
Just as he left is when it hit me. That's my future. That's what almost certainly will happen to me. Or at least similar things. Maybe worse things. Maybe not as bad things. But that person did me a service. He showed me what I can maybe expect.
I've heard it all before from the internet, but the "support groups" would always blather on about nothing, not really knowing anything about the disease they HAVE, and to just "keep a positive attitude". That's fine, but I want information. No one I know has had PKD before. I still don't quite know what to expect. And everyone is so different, it's not like hours of research can give much of an idea.
So this man did me a favor. It was a little disheartening, but also enlightening. He seems to be okay other than dialysis which is notorious for severely impacting quality of life. But that guy seemed alright. If he can do it, how could I not? Not that, at this point, I'd ever want to be on dialysis, but that's about the worst of it and people get through it.
I really am glad I met him.
Sunday, January 18, 2015
Aneurysm Testing?
I know I've talked about it a million times but, as you probably know by now, 40% of us have brain aneurysms, which "can rupture, causing intracranial hemmorhage and death in 8-11% of patients".
I'm not sure if that means 8-11% of the 40% or 8-11% of total patients.
Either way, it's enough to bother me. I'm a bit nervous I may be one of the 40%. So, I've been thinking (and I'm really anticipating my next nephrology appointment) of getting that checked out. I'm not sure where to start, but I'm insured now, and I'd love to take advantage of that.
But then I think about the results. What if I am one of those 40%? What would I do? Would I freak out? Could I sleep at night? Or would I be relieved and glad to know it's being monitored? In fact, if it's sizable, they could coil/fix it. That way, there would be no worries at all. But then again, if they're not big enough, they won't do anything but "watch" them. What then?
I usually like knowing what's going on with my body. It makes all the changes less scary and worrisome, and it makes me feel empowered about these things I'm otherwise powerless over. But, with PKD, it had a major downside of knowing there are two nasty things growing in my body. That I am powerless to fix my symptoms, that many of my symptoms were not even related, that this is progressive, that I am alone.
So what could this bring, if aneurysms are discovered? What bad things could come of that? Is it worth the worry it might cause? What about the positives that could come of it? No more unknown. No more senseless concern. My life might even be saved.
I wanna do it.
I'm not sure if that means 8-11% of the 40% or 8-11% of total patients.
Either way, it's enough to bother me. I'm a bit nervous I may be one of the 40%. So, I've been thinking (and I'm really anticipating my next nephrology appointment) of getting that checked out. I'm not sure where to start, but I'm insured now, and I'd love to take advantage of that.
But then I think about the results. What if I am one of those 40%? What would I do? Would I freak out? Could I sleep at night? Or would I be relieved and glad to know it's being monitored? In fact, if it's sizable, they could coil/fix it. That way, there would be no worries at all. But then again, if they're not big enough, they won't do anything but "watch" them. What then?
I usually like knowing what's going on with my body. It makes all the changes less scary and worrisome, and it makes me feel empowered about these things I'm otherwise powerless over. But, with PKD, it had a major downside of knowing there are two nasty things growing in my body. That I am powerless to fix my symptoms, that many of my symptoms were not even related, that this is progressive, that I am alone.
So what could this bring, if aneurysms are discovered? What bad things could come of that? Is it worth the worry it might cause? What about the positives that could come of it? No more unknown. No more senseless concern. My life might even be saved.
I wanna do it.
Wednesday, January 14, 2015
My Indoor Bike
As you may or may not know, my sweet husband bought me an exercise bike for our 2 year anniversary. No, it wasn't because he thinks I'm fat. No, it wasn't because I think I'm fat (I am overweight, but I'm too lazy to care). I realize I haven't really told anyone why I wanted it in the first place. I love telling everyone how strong I've gotten - I really have, I gain muscle like a champ! - but not why. So I worry everyone thinks I'm hiding some kind of emotionally abusive relationship.
It's not that at all. In fact, it's much more embarrassing and painful.
I wanted it because I want my body to look it's best while it can. You know, before PKD belly sets in.
PKD belly is not a gross thing. On most people, you hardly notice it and, if you're a female, most people just assume you're pregnant and all is well. But I am happy with the proportion of my waistline to my hips. My waistline makes my hips. My breast size is nothing to write home about, my tummy is loved by some and hated by me, and everything from the neck up is...just okay most of the time.
My waist-to-hip ratio is all I have, and PKD belly would destroy that. I just don't think I could feel pretty or attractive if that was taken away. I'm terrified, really, but what can you do? Nothing. Except "have a good attitude" about it and let it happen.
So I am, but I want to really enjoy my body first.
And I guess I am liking it more. I do thoroughly enjoy being strong. Feeling strong. Having more stamina. It's nice to fast-walk between classes without getting winded. I'm not losing any weight, but I'm pretty satisfied with the results. And I guess that's what this is all about. Getting stronger. Furnace of affliction and all.
Cheers, especially to any PKD readers out there.
It's not that at all. In fact, it's much more embarrassing and painful.
I wanted it because I want my body to look it's best while it can. You know, before PKD belly sets in.
PKD belly is not a gross thing. On most people, you hardly notice it and, if you're a female, most people just assume you're pregnant and all is well. But I am happy with the proportion of my waistline to my hips. My waistline makes my hips. My breast size is nothing to write home about, my tummy is loved by some and hated by me, and everything from the neck up is...just okay most of the time.
My waist-to-hip ratio is all I have, and PKD belly would destroy that. I just don't think I could feel pretty or attractive if that was taken away. I'm terrified, really, but what can you do? Nothing. Except "have a good attitude" about it and let it happen.
So I am, but I want to really enjoy my body first.
And I guess I am liking it more. I do thoroughly enjoy being strong. Feeling strong. Having more stamina. It's nice to fast-walk between classes without getting winded. I'm not losing any weight, but I'm pretty satisfied with the results. And I guess that's what this is all about. Getting stronger. Furnace of affliction and all.
Cheers, especially to any PKD readers out there.
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