Wednesday, September 30, 2009

Everybody has an opinion

When I had trouble having kids, I got all kinds of advice.

"You have to gain some weight. That will help."

"You need herbal supplements."

"You just need to relax."

"After having sex, stick your legs up in the air. That will help the sperm get to the egg faster."

I so wish I was kidding about that last one.

When I got diagnosed with PKD, the same thing happened. Surprisingly, the advice was similar, with the suggestion of weight gain and herbal supplements. People who had never even HEARD of PKD went spouting off about this remedy vs. that remedy, and how this one program helped them SOOOO much, never mind the fact that they had absolutely no idea what polycystic kidneys were. I mean, if it worked for their fibromyalgia, it would work for my genetic defect, right?

(No mention of sexual positions, though, which is actually slightly disappointing. I mean, can you think of a more fun way to get rid of a life threatening disease?)

Now that I'm running, I'm surprised that I'm STILL getting advice, now on how to run. I mean, isn't running sort of basic? Like, you just put one foot in front of the other? Oh, heavens no. There are all kinds of things to know about shoes, clothes, hydration, training schedules, nutrition, and everybody seems to think he (or she) is the expert. I found myself having a hard time not getting irritated when somebody told me that I was heading straight for injury if I didn't run a specific program, which, when explained to me, sounded like it would drive me completely crazy.

(And still no sex tips. What's up with that?)

It all makes me wonder if any of us knows anything about anything. It makes me realize how much we are at the mercy of the loudest or most popular voice, and how unless we want to spend a huge amount of time researching every method ever developed for whatever we are working with, we have to just rely on what other people tell us, and go with our gut.

My gut tells me that running 3 miles and feeling energized at the end of it is a good thing, that 8 hours of sleep and 3 days of rest during the week and eating food that is recognizable will go much farther than taking some unregulated herbal pills mixed with fish oil.

And sex. Sex is a good thing. But don't worry--I won't be sharing any tips either. You'll have to figure those out on your own.


Becky said...

Great post! Left me smiling...because I've been the recipient of said "tips". Keep running girlfriend! I'm following suit. :)

RobMonroe said...

I've gotten tips about the first part of your post, but when I tell people I want to run they just kind of snicker. Guess I'm a bit clumsy and people know that!

Sex advice - Enjoy it!

Laura S. said...

Thanks for this post. We too get all kinds of people giving their two cents. I will be remembering this with a smile the next time.

bobkat 3:16 said...

Seems like staying physically active is a crucial part of managing PKD long term. I don't think my friend Bobby has ever been the active type, exercising for the sake of exercising, so I think it may come hard to him now, when he most needs it. I suggested yoga. Hopefully he will try it.

Certainly you are the only one who knows what is best for you. And I am finding with Bobby there is a hierarchy of who he takes advice from. The doctors are first, his mother second, maybe me and other friends third. With PKD and its complications, there is just so much to think about. He gets a little overwhelmed and I think tends to just go with the flow. And that's fine, whatever makes him happy. I am the type of person to question every detail of my illnesses, but hey, I am not sick like him.

If you have been dealing with PKD for a while, I would love to get your feedback on his situation. His blog is at:

He is pretty sick right now and would really appreciate some words of encouragement if you have time. Thank for reading this.

The Wiz said...

You just said sex a lot to increase your traffice. Admit it.

Heather O. said...

bobkat, I have to say that exercising is one of the only things that I can point to and say that it has definitely helped me. I haven't been very diligent in my life about establishing a regular exercise pattern. The two times in my life when I have trained for a race, I have had to get serious about regular exercise, and I have found that it is the only thing that really helps with my flank pain. I have been almost completely pain free since I started training for a half marathon, and it's been really nice. Also, I like to think that regular, consistent exercise will ultimately help with my blood pressure issues, although I seem to still need the meds (3 days of not taking them and vomiting---160/100 ouch!!). But it can't hurt the BP, right? So that's my best advice--to eat real, unprocessed food, (you know, stuff that is immediately recognizable and doesn't have more than 5 ingredients) and keeping active. Those are the two things that have helped me the most.