Archive for July, 2008


I think that is the reason why I have yet to share this blog with my non ARPKD friends and family. I think I am insecure and nervous of their response to it. I think that most of them don’t even feel the need to ask what is going on because right now we “look” so good. The boys don’t have any outward symptoms of this disease and I often hear the “they don’t look sick”. So I think many of my friends just don’t think to ask how I am doing or how the boys are doing. Which is really hard for me. It’s here every day for me. I’ve posted this before but it is always hanging over my head.  Which is why I started this blog to get it out of me, but also why I am scared to share it. I know I will soon though.


July 31, 2008 at 6:11 pm Leave a comment


Matt and I are both pretty anti guns. Charlton Heston would have hated us actually. I personally have always been against the NRA and Matt has become more so as he has gotten older. We don’t allow the boys to play with guns nor do we allow any type of “weapon” play in the house. We often talk about guns and how dangerous they are. Before we let the boys go to a play date to someone’s house without us we ask the parents if they have real guns in their home. We have yet to have someone say yes but would probably not let them go without us if they indeed did have a gun. We also talk about various scenarios of what to do if they are at a friend’s house and the child shows them a gun. They know to run and run fast. Overprotective? Maybe. Crazy? Maybe. But there are worse things in this world to be crazy and overprotective about.  We feel like the world itself is a very crazy place anyway and why make it any crazier.

So the funny thing is this. Today I dropped Max off at his first day of Cub Scout day camp. He is a cub scout and really likes it and went to this camp last year and loved it. So when we dropped him off this morning the counselor says to me “we have something new this year at camp… ‘BB’s'”. What??? I looked at him and said “excuse me?”.  He said “BB Guns”. I was shocked and also speechless and kind of mumbled something like “we don’t really do guns, and Matt is going to love this (said very sarcastically)”. So of course because I am not good on the spot I left Max there and proceeded to call Matt from my cell, who was irate by the way. He immediately called the camp and spoke to the director who tried to explain to him the advantages of using BB Guns and that “studies show teaching children proper gun safety….”. Blah, blah, blah. Matt kept saying “what studies” but she didn’t really know. He said he did not want Max using a gun by any means, but would like to read these so called studies.  

At work today my coworkers and I had a blast talking about the studies.  “Studies show that with proper gun safety children learn how to fire at people more accurately”. “Studies show that with proper gun safety children learn how to kill more affectively”.  “Studies show that with proper gun safety who really needs toys”.  And really but “haven’t you heard about Dick Cheney and proper gun safety??”.  My friend googled “cub scouts and BB guns” and evidently this is a big topic.  One thing that was said is that since “most cub scouts are exposed to fire arms in their homes it is important to teach them about proper gun safety”. The thing is we live in a very urban area and most people with guns around here are using them for other things besides hunting deer. And really aren’t most of these people who are exposed to hunting guns in the home live in a small town in the south (no offense to those of you out there who do).  And, not to mention the fact that Max doesn’t really need to learn proper gun safety. He will not be going hunting any time soon nor will he pass the physical to be a police officer or in the armed forces.  So pretty much proper handling of guns is out.

July 29, 2008 at 12:33 am 1 comment


I’m obsessed. I admit it. I am addicted. I cannot stop myself. From…. going on Facebook and looking for old friends. Crazy, weird, fun, addicting, silly….. But I keep going back for more. It’s actually quite humorous. My sister and I joke with each other about how many “friends” we are have on facebook. And whether we will ask so and so to “be our friend”. I feel like I’m in high school, which I hated but maybe have gotten past that feeling. Or maybe not. But, I still like looking to see where people are and what they are up to.  I’ve actually found some people I haven’t talked to in years. I’ve found people I went to nursery school with, elementary school with, high school, college….. Some people look exactly the same. It brings back so many memories.  Of growing up in Kansas City. Of all of the Jewish organizations I belonged to. Of college. Of my sorority. Of just so many things. 

Besides reconnecting with people a small part of me feels like it is also a way to educate people about ARPKD. I know, I know that is my other obsession. But it’s my life.  So besides being online to do my PKD Walk stuff, to search ebay for various antiques, to buy my groceries (peapod is the best), to shop at zappos, to read my friends’ blogs, to do my own new blog…. I am now a facebooker too!!!

July 28, 2008 at 2:18 am Leave a comment

“The” Walk

In September in about 60 cities around the country and a few international ones too the PKD Foundation holds a Walk for PKD.  This will be my third year participating in it.  I really like doing the walk. I like raising money for it and I feel a great accomplishment the more money I raise. You could actually say I am quite compulsive about it.  I check my walk stats a lot, send out tons of emails and letters, and obsess about it compulsively. I guess that could be called obsessive compulsive. But, I feel it is one great way to get the word out and educate my friends and family and also a great way to raise money for research. In the 2006 Walk for PKD my team “Three Peas in a Pod” raised over $17,000 and in 2007 our team raised over $16,000. Both years qualified me for a visionary award, which is an award the Foundation gives out to anyone who raises over $6000.  

Go to to see my walk page and read my story there.

One other thing that makes me happy about this is that my grandma used to be a great fundraiser. She was active in many organizations but mostly raised money and helped organize something in Kansas City called the Jewish Council’s “Party for the Blind”. For as long as I can remember I remember my grandma volunteering and helping with these parties. I remember as I got older I helped her too.  And, I even have a statue that she received for all of her volunteer work.  So in a way I feel that some of this fundraising has come full circle. I often say how proud my grandma would be of me that I raise so much money. I do it for very selfish reasons and my grandma did it because it was just in her blood. But, I still do feel really good about it.

I hope I can at least get to $10,000 this year. But, whatever I raise will be used towards very helpful research specifically in ARPKD. Last year the ARPKD chapter of the PKD Foundation funded a research grant that is studying the pathogenesis of congenital hepatic fibrosis and biliary cyst formation in ARPKD. Besides that the PKD Foundation funded over $400,000 towards ARPKD research.  How great is that?????!!!!


July 23, 2008 at 10:41 pm Leave a comment


I remember when I first moved to New York and I was having a gate installed over my fire escape window. After the man left a friend of mine who was from the city asked me how much I tipped the guy who installed it. I looked at him like he was crazy. I paid him the amount on the bill and that was it.  He explained to me that in NY you always tip everyone. Well, Dorothy I guess we’re not in Kansas anymore. That’s how I felt. The silly girl from Kansas who knew nothing about tipping.

Today I went out and tried to figure out what kinds of tips to give the counselors at the boys Y camp. The last day is on Friday. I am so clueless about this. The hard part is that Nate has 7 counselors and Max has 6. If it were just 2 or 3 then I think it might be easier. But, I cannot give a ton to all of them or then I would be broke. But, I hate to be a cheap tipper.  And then the decision of what to give. I do give cash tips to the garbage men and the mail man at Christmas time. But, I really don’t like to give money tips to other people. So, I did a Target gift card for the 2 head counselors of each group and a Duncan Donuts one to the other 9 people.  I hope it’s good and even though it’s not a lot does show our appreciation. I know most of these counselors work really hard and don’t get paid a ton of money.

See, it’s the little stresses in life that I worry about the most. I push the big stuff into the back of my head and try to ignore it. Well, I could never really ignore it because it’s always there but I do try. I really do.

July 22, 2008 at 8:48 pm Leave a comment


All my life I have had weird dreams. Some just strange and some very scary. Recently I had one about Max hooked up to a machine with blood coming out of him. At the time I didn’t realize but it was probably about dialysis. But, in my dream someone unhooked Max from the machine and hooked his blood up to their child and was stealing his blood. I woke up screaming. It was a very horrifying dream and my heart was beating so fast.  I feel so empty after I have these dreams. I know they all stem from my fears and anxieties over the future and then they come out in my dreams. Probably because I keep so much inside of me.

But I also tend to have many dreams that someone is in our room. I am half awake and look over and see someone standing by me. Or I have spiders crawling all over me (I have a huge phobia of spiders – probably stemming from my childhood and everyone who killed them in my house would then pretend to throw them at me!). Anyway, I often wonder why I have these very strange dreams.  

So, I’m pretty much crazy, huh. I have panic attacks and strange dreams.  Huh.  I often wonder about myself.  Julia and I both noticed on Grey’s Anatomy one night that Meredith said “Don’t wonder why people go crazy, wonder why more don’t”. I get that. I totally do!!!

July 21, 2008 at 3:04 am 1 comment


The back and forth is just getting ridiculous at this point. Now it has moved beyond the original issue of her singling me out on the list serve and attacking me to a competition between the two organizations. People just don’t know when to stop. This has always been my complaint of the list serve and her posts. Every time she posts it is never a helpful response to the family only a response to check out her website and find the info there. I joined the list serve to hear other’s stories and run ideas by people, not to be thrown to a website every single time I post a question. Not to mention being singled out and attacked so publicly. I just don’t understand how more people don’t see it.

It is not about what each organization has to offer because I really do think they both have a lot to offer. It has turned into a sparring match, which I truly find ridiculous. I have always made a point in all of my postings to never make it a competition and to never really say much about the organization I am really not involved with.  Even in my response to her attack I didn’t mention her or her organization.  Crazy.

My goal in all of this is to be the best advocate for my children in the best way I know how. I seek information all of the time to learn more, educate myself, and help me seek the best treatment options for my kids.  I am the “only voice for ARPKD” for my children!!!!

July 17, 2008 at 11:08 pm Leave a comment

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