Archive for November, 2010


I think I have realized that I am angry the boys have ARPKD. I’m sure that is not a big surprise. But I often hide behind my happy smile and my inner sadness but forget about my anger. I don’t know what to do with it. I wasn’t raised to really show these kinds of emotions, especially anger.  Most people don’t like angry people. But I am mad. Mad that my boys have to deal with this in their lives. I’m mad they can’t live simple happy lives like so many people out there. I’m angry that I have so much stress in my life and I’m especially angry that I don’t feel like I am handling it all as well as I would like to. I lose my cool a lot more than I used to. I snip at the boys. I’m not as patient with friends and family. I don’t enjoy work as much. I’m just not the same person I was pre-diagnosis. But I never want the boys to feel badly about their diagnosis. I do not resent them, just the disease. And I guess I am also resentful of people who take their lives and their health and their children’s health for granted.

The main thing is how do I embrace all of this. A friend of mine told me I need to look at the good ways I am handling this disease and embrace that to help get rid of my anger. Like how I am so proactive in the boys’ health. I try to stand up to doctors for what I feel is right for the boys. I make sure I have all of their paperwork in order. I do a lot of research so I know the right questions to ask. I learned how to take the boys’ blood pressure. I measure out their pills each week and make sure they take them. I go to all of their doctor’s appointments with them. I try to be as positive about this disease as possible with them. Plus all of my work with the PKD Foundation. I am actually very proud of that and the money I raised with the walks. And most importantly although I wish no one had to go through this I do feel honored to talk to other families who are newly diagnosed or need extra support and often my help. I feel like this is one of the things I was meant to do with this disease.

So as this year ends and another begins I am going to try to let go of at least some of my anger and embrace the positive aspects of my life.


November 30, 2010 at 9:46 pm Leave a comment


For Thanksgiving this is what I am thankful for:

1. My boys… all four of them

2. My health

3. The boys’ status quo health

4. Having health insurance

5. Matt and I both having jobs

6. Having a house to live in

7. Having food on the table

8. Our friends and family

9. Living in a big city with many healthcare options

10. Access to the PKD Foundation and it’s many resources


So those are the top ten for this year’s Thanksgiving, which was a really nice holiday for us.

November 28, 2010 at 8:35 pm Leave a comment

In a funk

I’ve just been in a weird mood all week. I think I am overwhelmed with all of the little things in life right now. Like the normal stuff of grocery shopping, cooking, cleaning, laundry, work, etc. But then the little things with the boys of daily meds, reordering meds, making doctors appointments, taking blood pressures, etc. Max has a follow up with the pulmonologist in a few weeks and then he probably needs to see the endocrinologist at some point. Gabe has an appt with a urologist in a few weeks, I need to call to follow up with the endocrinologist, I talked to the pediatrician today about an issue, he needs an OT evalution, and eventually he also needs to see the pulmonologist. Now these really are just little things. Max’s asthma is stable and he only needs to see the endocrinologist as kind of a routine appt because of his kidneys and to make sure he is growing okay. Gabe is seeing the urologist just to make sure there is nothing else going on because we are having some issues with staying dry at school. He needs an OT evaluation because his fine motor skills are very weak. I’ve known about this for a while and been ignoring it but his teacher finally said something so I thought I should get the ball rolling. And he doesn’t have any symptoms of asthma right now but does get croup a lot and because of his hypoplastic lungs I should have him see someone.  Even though nothing major is going on I just feel so overwhelmed with all of this stuff in my life. I think it’s hard that I work part time and never have a whole day to devote to this kind of stuff. I think this is why I am always thinking about the ARPKD. It is always there even if it’s not there. Even though their kidneys are doing relatively well at this point there are so many other things, most of which are in fact related to having two children with chronic kidney disease.

November 12, 2010 at 5:09 pm 1 comment

It’s All Relative

There will always be something better and something worse. There will always be someone with more money and someone with less money. There will always be someone who is fatter/taller and someone who is skinnier/shorter. There will always be someone with more and someone with less. There will always be someone who is happier and someone who is sadder. There will always be someone who has a much harder life and someone with a much easier life. There will always be someone who is healthier and someone who is sicker. ARPKD will always be worse for some and better for some.  It is all relative. My worst thing is my worst thing and your worst thing is your worst thing. There is no comparison. As I’ve said before I have a friend who says if we all put our problems in the middle of the table we would take back our own. The grass is not always greener…..I just have to keep reminding myself of these things and keep pushing through.

November 10, 2010 at 9:09 pm Leave a comment

Monday Memories

Having a hard time getting my thoughts straight for a post so I thought I would just post an adorable new picture of my boys! We will use this pic as our thank you/holiday card. I know I say this all the time and that I am biased but boy are they cute!

November 8, 2010 at 2:13 pm Leave a comment


There was an article in a local paper recently about someone I grew up with. The article was boasting about this woman whose husband is a musician and how she is “super” mom in a way. Her husband travels a lot and she has two boys and she works as well. It talked about how active she is with her children and with their activities and how she volunteers for a lot of things. In all honesty I remember her being a really nice person and I’m sure she still is. The thing that bothered me is that she has two healthy boys who as far as I know have no issues. I’m not sure I’m expressing my feelings here but something about the article really bugged me. I feel like I would be a better mom if I didn’t have all of these things to worry about in my life. I would be able to devote more time to my boys, their after school stuff, the PTA, the temple, etc. I feel like I would be a better wife as well. A lot of the time now I feel like I’m drowning or just keeping my head above water. Usually it’s just my nose that stays above water, not even my whole head. Max now has asthma and takes a new medication at night. So he takes one and a half white pills twice a day, one blue pill every other day in the morning, and a red pill at night. Gabe takes one whole white pill in the morning and a half of that white pill at night, a half of a brown pill two times a day, and a purple pill in the morning. And this isn’t even close to the amount of medications that most of my friends’ kids with ARPKD take. So I actually have nothing to complain about. But Gabe has been peeing even more than before and doesn’t even stay dry most days at school and especially not at night. Max has been complaining more of his chest feeling tight and wanting to do the inhaler. Gabe’s tummy seems to be bothering him more and he is tired a lot of the time. And to top it all off Nate is having some big behavioral stuff going on and I’m not sure I’m doing the right thing with him to make it better for him. I’m lucky if they’ve all eaten all of their meals, taken all of their meds, and have clean clothes, not to mention I cannot remember the last time I took their blood pressure. Then there is the general upkeep of my house, work, paperwork for work, cooking, etc……… I feel like the stress will never end. And I pulled my back out this week. So really this is just a complaining sort of post with a lot of feeling sorry for myself on top!

November 5, 2010 at 2:59 pm Leave a comment

Monday Memories

Happy Halloween!!! Sometimes, well a lot of the time, it’s nice to pretend like we are the “typical” family doing the typical family thing like trick or treating and forget about all of the other “stuff” going on in our lives. Last night was one of those times. I might be biased but my boys sure are cute!!!!

November 1, 2010 at 9:36 pm Leave a comment

November 2010
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