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.
Tuesday, August 18, 2015
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.
Tuesday, September 2, 2014
Change.
A surprising amount of things change after you find out you've got a serious illness. Things you wouldn't even expect. I know I touched on this in my "1 Year!" post, but it's been bothering me. I wasn't sure I wanted to do this, but I feel like it's relevant to PKD.
The things I'm talking about are purely psychological. Firstly, the headache fear. They've actually studied this. 10% - 40% of us have intracranial aneurysms so, when we get headaches, there is a sense of fear that we're having a bleed. I've learned to get over this fear as I've learned that the bleeding causes an unprecedented type of headache usually accompanied by nausea, vomiting, or unconsciousness. But still, headaches just aren't the same anymore.
That's the most frivolous change. Mostly my personality has been affected, and I hate it. I think it might be because I'm less anxious (believe it), but I say what I think more. Sometimes this is a good thing, but most of the time, it's not. Some of the irrational things my brain comes up with just aren't acceptable, so I've been able to monitor what comes out of my mouth. Not that I wasn't honest before, I just wasn't mean before. I've gotten way more mean, bitter, angry, impatient, self-absorbed, and depressed. So my irrational thoughts beforehand are even more cynical, pessimistic, and crazy than before. And the gates are open!
It's frustrating. I hate meeting new people because it's not the real me. I hate that some people I really care about only knew me for a year before my diagnosis and that maybe they think this is who I am. I can't control my new feelings. My special parchment states that I have a pure heart, but it doesn't feel like it anymore. Like I'm half of what I should be.
On top of that, it just feels like no one cares. People, family even, forget that I have this. They forget the name of it. One family member compared it to PCOS, and thinks a transplant is a cure-all. It's clear she has no idea what PKD is. It seems like none of them do sometimes. Which is another thing. Why has no one been tested yet? Why has no one so much as Google'd this? It's selfish, but I feel like it's not being taken seriously. So it's like I'm rotting away (personality-wise, mentally, and physically) and no one even notices. Or maybe they just want me to get over it. I do too. I really do.
I kind of understand though. Having this makes it hard to get life insurance. It's a bit scary. And, as is apparent, it's life-altering at the least. Maybe they don't want to turn into neurotic, mean people. Anyway, I just wish I could tell everyone that this isn't me, like wearing a sign or something, but then it's an excuse. I truly hope I'll get over this sometime but that, in the meantime, people will forgive me.
The things I'm talking about are purely psychological. Firstly, the headache fear. They've actually studied this. 10% - 40% of us have intracranial aneurysms so, when we get headaches, there is a sense of fear that we're having a bleed. I've learned to get over this fear as I've learned that the bleeding causes an unprecedented type of headache usually accompanied by nausea, vomiting, or unconsciousness. But still, headaches just aren't the same anymore.
That's the most frivolous change. Mostly my personality has been affected, and I hate it. I think it might be because I'm less anxious (believe it), but I say what I think more. Sometimes this is a good thing, but most of the time, it's not. Some of the irrational things my brain comes up with just aren't acceptable, so I've been able to monitor what comes out of my mouth. Not that I wasn't honest before, I just wasn't mean before. I've gotten way more mean, bitter, angry, impatient, self-absorbed, and depressed. So my irrational thoughts beforehand are even more cynical, pessimistic, and crazy than before. And the gates are open!
It's frustrating. I hate meeting new people because it's not the real me. I hate that some people I really care about only knew me for a year before my diagnosis and that maybe they think this is who I am. I can't control my new feelings. My special parchment states that I have a pure heart, but it doesn't feel like it anymore. Like I'm half of what I should be.
On top of that, it just feels like no one cares. People, family even, forget that I have this. They forget the name of it. One family member compared it to PCOS, and thinks a transplant is a cure-all. It's clear she has no idea what PKD is. It seems like none of them do sometimes. Which is another thing. Why has no one been tested yet? Why has no one so much as Google'd this? It's selfish, but I feel like it's not being taken seriously. So it's like I'm rotting away (personality-wise, mentally, and physically) and no one even notices. Or maybe they just want me to get over it. I do too. I really do.
I kind of understand though. Having this makes it hard to get life insurance. It's a bit scary. And, as is apparent, it's life-altering at the least. Maybe they don't want to turn into neurotic, mean people. Anyway, I just wish I could tell everyone that this isn't me, like wearing a sign or something, but then it's an excuse. I truly hope I'll get over this sometime but that, in the meantime, people will forgive me.
Saturday, August 23, 2014
Pain
By far, the biggest complaint (and there are a few) in the PKD world is pain. It's weird, because there are some doctors out there who believe it wouldn't cause any pain to have cyst-infested footballs in your stomach - squishing up all your organs causing GERD, IBS, and what the medical community calls "mechanical problems". Basically, you can't tie your own shoelaces. And, for the 85% of us who'll win the prize of developing polycystic liver disease, it's markedly worse as far as pain goes, and there's much less room in your abdominal cavity.
Clearly those doctors don't know anything about PKD, another common problem in our world. But pain management is necessary. There are a few things that could cause your pain and, judging by what is ailing you, they have different methods of addressing it. If your pain is caused by kidney tissue being pulled apart by the growth of your yellow friends, they prescribe pain medication ranging anywhere from Acetaminophen to morphine. If your yellow friends are too big, they'll de-roof or aspirate them. It's just a fancy way to say "pop and drain". They can even take a kidney out if it's getting too big for the rib cage to hold.
There are different thresholds for pain. When described in medical text the pain can be chronic or spontaneous, mild, or severe. I guess it really depends on where the cysts are. As I've mentioned before, there was a girl about my age in the support groups who couldn't even go to school with her 8 cysts. I have "too numerous to count" decently sized cysts and, luckily, it hasn't been that bad.
It hurts almost all the time. It especially hurts when I bend or twist at the waist or if I'm sitting without my back supported. Two years ago, the pain was mostly in my stomach but, as time goes on, it's all in my back and it's getting worse pretty quickly. When I worked at Maverik is when it started getting really bad. I figured my back was just sore from standing 8 hours a day, 6 days a week. That made sense and, when I stopped working, it got better. Now though, it doesn't go away. I only work 15 hours a week on busy weeks, and I don't do much heavy lifting, if any.
Here is my point: I really worry I won't be able to work. The jobs I've always wanted require moving things. Moving bodies probably wouldn't be a good idea - it's one of the reasons I stopped trying for mortuary school. But even moving equipment, running, and standing are becoming chores as it is, and it's only going to get worse.
There's also the fact that I really don't want to ask for help. I like sucking it up and pretending to be tough. Fake it 'til you make it, right? But I complain about my back more than I'd like. I say: "My back hurts." And then I stop saying it and get some pills. The pills aren't working anymore. I read a study that Acetaminophen actually does nothing for back pain. I believe it, but I don't know what to do now.
I guess I'm just embarrassed that I need it. Or maybe I'm just scared to "be on medication". It's like the first step on the road to a battle I'm not ready to fight.
Clearly those doctors don't know anything about PKD, another common problem in our world. But pain management is necessary. There are a few things that could cause your pain and, judging by what is ailing you, they have different methods of addressing it. If your pain is caused by kidney tissue being pulled apart by the growth of your yellow friends, they prescribe pain medication ranging anywhere from Acetaminophen to morphine. If your yellow friends are too big, they'll de-roof or aspirate them. It's just a fancy way to say "pop and drain". They can even take a kidney out if it's getting too big for the rib cage to hold.
There are different thresholds for pain. When described in medical text the pain can be chronic or spontaneous, mild, or severe. I guess it really depends on where the cysts are. As I've mentioned before, there was a girl about my age in the support groups who couldn't even go to school with her 8 cysts. I have "too numerous to count" decently sized cysts and, luckily, it hasn't been that bad.
It hurts almost all the time. It especially hurts when I bend or twist at the waist or if I'm sitting without my back supported. Two years ago, the pain was mostly in my stomach but, as time goes on, it's all in my back and it's getting worse pretty quickly. When I worked at Maverik is when it started getting really bad. I figured my back was just sore from standing 8 hours a day, 6 days a week. That made sense and, when I stopped working, it got better. Now though, it doesn't go away. I only work 15 hours a week on busy weeks, and I don't do much heavy lifting, if any.
Here is my point: I really worry I won't be able to work. The jobs I've always wanted require moving things. Moving bodies probably wouldn't be a good idea - it's one of the reasons I stopped trying for mortuary school. But even moving equipment, running, and standing are becoming chores as it is, and it's only going to get worse.
There's also the fact that I really don't want to ask for help. I like sucking it up and pretending to be tough. Fake it 'til you make it, right? But I complain about my back more than I'd like. I say: "My back hurts." And then I stop saying it and get some pills. The pills aren't working anymore. I read a study that Acetaminophen actually does nothing for back pain. I believe it, but I don't know what to do now.
I guess I'm just embarrassed that I need it. Or maybe I'm just scared to "be on medication". It's like the first step on the road to a battle I'm not ready to fight.
Thursday, August 21, 2014
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