Archive for August, 2008

Emotionally Detached

Why is it that so many people in my life are so emotionally detached? I don’t think I really understood that until I was older. Growing up I knew something was missing in my house but didn’t know exactly what.  I noticed when people passed away that my parents were not as devastated as I thought they should be. The first death I remember is that of a beloved Great-Great Uncle of mine named Uncle Louie who lived in NY. I had been so excited because he was to come to my Bat Mitzvah a few months later but then passed away. At that time I didn’t really grasp the whole concept of death (wish I still didn’t) but I remember being so sad and my parents not really reacting. Then a few years later my dad’s mom passed away. I was 15 and it was sad even though we hadn’t been close, but my parents got past it so fast. Then the hardest one was when I was 17 and my Uncle Sid passed away in a car accident and I was so close with him. I was devastated and had such a hard time dealing with it. I remember my parents at one point telling me I needed to deal with it better because my grandparents wouldn’t be around forever (and I was extremely attached to them). 

It’s strange to me. At the time I didn’t get it but now I realize it is just that they are emotionally detached and just don’t have deep emotions or maybe are just in denial of things.  Don’t get me wrong I am not complaining about my deprived childhood. I did not have a deprived childhood as far as financial things. I was able to buy most of what I wanted, I had nice clothes, we lived in a nice house, I went to a good college and grad school that were all paid for ….. but emotionally they just weren’t there. I was told many times to toughen up about things and to not cry about things.

Even recently when I told my dad about my panic attacks he told me I needed to get it together. The thing is Matt’s parents are just as detached as mine and don’t want to hear the emotional aspect of our lives at all. They really don’t want to hear any of the bad aspects. I understand it to a certain extent since they lost a child, but it is still hard for me.

The thing is though that the majority of my non ARPKD friends are also very detached. And Matt even admits that he needs to be detached at times because he just can’t deal. And for me I can never be detached, nor do I really want to be. But sometimes I would like to live my life in la la land with everything being just perfect and not worrying about a thing.


August 31, 2008 at 1:45 am Leave a comment

The Diagnosis

We had friends staying with us this week and they started asking questions about how the boys were diagnosed and it brought back a lot of memories, most of them painful ones. Hearing the diagnosis of ARPKD was a really hard thing and even harder the second time around. Granted Gabe was born with lung issues and a possibility of something going on with his kidneys. But I still didn’t want to believe anything was wrong with him. When he was first born and was so sick I was stuck at a different hospital and had just had a C-Section. I didn’t have access to Dr. Google so really just lay in the hospital bed worrying about it. Just worrying about his lungs, not really that he would be diagnosed with a kidney disease. Then once he pulled through and the first nephrologist (Dr Bad Bedside Manner who we don’t use anymore) didn’t want to diagnose him I guess I got my hopes up. Then on April 18, 2006, (Max’s sixth birthday) we took Gabe to Dr Awesome for a second opinion. He immediately gave the diagnosis if ARPKD as a “working diagnosis” and wanted to do more testing to confirm. That was a hard day. We had to pull it together to go to Max’s school to celebrate his birthday, which was not the easiest thing in the world to do. The next few weeks went by in a blur. I was home taking care of a newborn, taking care of 2 older boys, recovering from the C-Section, living life, and trying to plan Gabe’s bris…. While talking to Dr Awesome we asked about Max and Nate. Since they were not showing any symptoms he felt we didn’t need to get them tested but also said if we would lie awake at night worrying then we should. So, guess which one we chose? After not much deliberation we decided we needed to. On Wednesday, April 26th, we took them in to have sonograms.  Nate went first and screamed the whole time. He was not yet 3 at the time and just didn’t want to be bothered (as usual). We had to hold him down, which the technician said made it harder to read the sonogram. Then Max lay there like an angel. The technician left the room and came back in and said the radiologist wanted to come back in and examine Max. I said “you mean Nate”. I thought she had the names backwards since Nate was the one who wouldn’t lay still. She said “No, Max”. We knew then. My heart sank and I had a pit in my stomach, that really hasn’t gone away. I have never been so devastated in my life.

For some reason Max’s diagnosis was much harder on me than Gabe’s. I think with Gabe since he was sick at birth we were expecting it more. Plus we were just getting to know him and he didn’t have a personality yet. But, Max was 6 and my sweet boy. It was just devastating. Of course now I am equally devastated by both boys having ARPKD and I wish neither one had it. But, I think I will always remember back on when both boys were given the diagnosis and how I felt.

August 30, 2008 at 1:50 am 2 comments


I have this friend who is going through a whole lot right now and I feel really bad for her. I also feel helpless because I live far away and feel like there is nothing I can do for her. I know just by me being her friend I am supporting her but I want to DO something.  She already had a lot going on and now even more and really it just sucks. And why can’t she get a break. And it makes me sad. I’m sad for her and sad for her kids and sad that life is like this sometimes.  

I’m thinking of you as usual and always here for you.  Hang in there. It really has to get better because it cannot get much worse! Trying to be sarcastic there for you to make you smile even though I do know it could get worse but really hope things start to happen fast in a positive way.

August 29, 2008 at 3:20 am 1 comment


Some would say for the most part I am a goody goody but really I hate rules. I don’t like to conform, don’t like to be a part of a group with rules, I just don’t like it. So I joined this book club a few years ago. I joined it because a friend of mine asked me to and I like the idea of a book club. The thing is I am very different then most of the people in the group. I do obviously like my friend and her sister in law who is in the group. There are a couple of other people I can relate to but mostly I am so different from the people in the group. Not to mention that even though these people have been going out to talk about the book with me once a month or so for the last 3 years they have not been overly friendly to me and not really supportive of the boys. Half the time no one even asks me about them, and I’m lucky if they donate to my walk.  Or even walk with me. Anyway. I like reading, a lot, and I like discussing the books. But lately it has become a drag as far as the personalities of the people (women) in the group and one in particular has become quite rude in her emails. The thing is she set up these “rules” about the book club and maybe I didn’t adhere to all of them so she is “frustrated”.  

We were not going to do a summer read but some of decided to do it anyway and picked a date in August. It was my pick and I picked the Samurai’s Garden, which is one of my favorite books. If you haven’t read it I highly recommend it. It is by Gail Tsukiyama. Anyway, the week of the meeting 2 days before the rule maker emailed and said something came up. Then the day of the book club 2 other people copped out. So it left me and 2 others and we decided to postpone. I suggested pushing it to September and the people who hadn’t read it could and then we could discuss it. What I didn’t realize was there was a date already picked out and I picked out a different one. Then 2 people dropped out completely. Then the rule maker started sending these rude emails. I know it’s hard to tell tone in an email but she kept saying “whatever” in it.  Like “The funny thing is when we picked out dates last year we were to have the book club meet on the 19th, but whatever goes….” and “I’ve read the book…..Date whatever…” and “I finished the book, but am not up to reading her second book.. I don’t think I’ll be able to handle another “asian” themed book.  Sorry if that’s not PC. Plus people are dropping like flies….”. I just think it’s so childish and really uncalled for. And not to be rude but she is single and really doesn’t have a lot on her plate and she is complaining. I really just don’t need this in my life. And what frustrates me is she keeps putting the ball in my court to make all of these decisions regarding the whole book club when she has all of these opinions about it. It really don’t care to be honest with you. I doesn’t matter when we meet, where we meet, who comes, who doesn’t come, I just like reading (to get out of my life for a bit) and like discussing it.

These were really good ones that we read: The Kite Runner, The Samurai’s Garden, Falling Leaves, My Sister’s Keeper (read pre-Gabe and not sure I could read it now), The Red Tent, Snow Flower and the Secret Fan, The Time Traveler’s Wife. I don’t remember the names of most of the bad ones, but I didn’t really like Atonement, Eat Pray Love, or Julie and Julia: My year of cooking dangerously!

I think I honestly might be a bookaholic. I’m addicted. Not only am I addicted to reading but also to going to book stores and browsing and buying books. I have so many here it’s scary.  Like I mentioned above I like getting out of my life into an imaginary one. I don’t love non-fiction books but do like historical fiction. I hope my boys grow up enjoying reading as much as I do. Nate starts Kindergarten next week and I am so excited for him to learn to read! Scary!

August 28, 2008 at 10:34 pm Leave a comment


I have a major word finding problem lately and frankly it’s freaking me out. I think the main reason it’s making me crazy is because I have had vertigo for 3 weeks as well for no apparent reason! Weird, huh? About 3 weeks ago I woke up and the whole room was spinning. And, no I did not have a hang over. I wish that were the reason. At least then I would have had fun the night before and an excuse for it! About a week after that I went in for a physical and told my doctor about the vertigo but she kind of blew it off. (Hence my post yesterday about finding myself a new doctor) I do think that stress could be a major cause of this vertigo. Stress you say? Ha! But finally yesterday I went to an ENT who was so nice and really talked to me about it and gave me a thorough exam. He thinks it is a benign case either from unknown causes or from a viral infection in my inner ear. But he is having me do a few tests to rule out some other causes.

The thing is I was already a little bit moody (maybe a lot you might say) about life in general. But it really sucks not feeling well, especially for 3 weeks, especially when you have 3 kids, especially when you work part time…. I was feeling extremely nauseous during the day as well but that has gotten slightly better. But when I lie down at night the whole room spins. And it just really stinks and I am so ready to feel better. Ugh! Obviously I’ll take benign vertigo over other things but I would rather not have anything. And then with the word finding problem and my head feeling fuzzy I just get freaked out. Hypochondria?

August 28, 2008 at 12:48 am 1 comment

Bad doctors

I was talking to some friends tonight about how awesome our nephrologist is. He is just the best. Not only is he educated on ARPKD, but he is smart in general and extremely nice. And to top that off he emails me back usually within an hour or two when I have a question. No matter how many questions I have.

This got me to thinking back to this really bad urologist I took Max to last year. We wanted him to have a bladder sonogram and a consult with a urologist to rule out anything else besides just normal PKD stuff and not concentrating the urine. When we got to the office I asked the doctor if he had ever seen any patients with ARPKD. I was there with all 3 of my kids. His comment was “I used to see them in the NICU when they were very severe and already on dialysis. But, most of those are probably dead by now”. In front of all of my kids!! I should have gotten right up and walked out but I didn’t. I should have called back right afterwards and complained, but I didn’t. 

I think I don’t always know what to do in those situations until after they are finished. I think I don’t always realize how bad a doctor really is until I see a really good one, like Dr Awesome (mentioned above). I think I need to start being more proactive with doctors and not taking their crap! I finally left our pediatrician after 8 years, which is a good start. Now it’s time for me to find a new internist!  No more bad doctors for us.

August 27, 2008 at 3:44 am Leave a comment

Proud of myself

I’m proud of myself that I learned how to take the boys’ blood pressure with a manual cuff. It is not the hardest thing in the world to learn but also not the easiest for a lay person. I should have been a nurse. Ha! But, seriously I am glad that I learned. I have been a little bit lax about taking it lately but did take it tonight. Max’s was good and Gabe’s was slightly high but he was moving around a lot. That’s the problem with the manual cuff is that when they move it messes it up and sometimes it is just so hard to hear. I honestly don’t think the nurses at our old pediatrician’s office always heard the right thing as fast as they did it. There were a couple in particular who did it so fast and got really low numbers that I think they just missed the top number, which is so frustrating to me. They don’t take b/p’s that often that they should have been doing it that fast. They just couldn’t get an accurate number like that.

But it does make me feel more in control of the situation to be able to monitor it on my own. And it’s just one more way I am advocating for them. So that makes me feel better too.

August 26, 2008 at 2:38 am 3 comments

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