Monday, April 30, 2012

What They Knew in Junior High

This has nothing to do with kidney disease but is too good to keep to myself. As a bonus, it relates to a recent post.

I had a small-world moment on Facebook last week, when I noticed that one of my best friends (Aimee) was tagged in the same post as one of my childhood friends (Lonnie). Turns out they both live in the same city, have kids in the same school, and even live in the same neighborhood.

Aimee and Lonnie knew each other, but neither knew that they both had a connection with me. Until now. I'm sure that the conversation between someone who knows me really well now and someone who knew me really well as a kid was entertaining, to say the least.

Aimee mentioned she was coming to see me last weekend, and Lonnie unearthed some documents and sent them along -- including a photocopy of our junior high class mock awards. You know, stuff like most popular and best dressed -- and no, I didn't win either of those. But I did win two categories:

1. Class Optimist
2. Best Joke Teller

I have no memory of these mock awards and got a huge kick out of reading over the list. I was fascinated by the timing, since I just blogged about my writing style and how a co-worker pegged me as an optimist. So it must be true. I mean, even if you don't think handwriting analysis is credible, you can't argue with the wisdom of 8th graders, can you?

Maybe optimism truly is a part of my core being. I'm glad, because I need every ounce of positive energy to fight this fight.

Then there's this joke telling thing. All I have to say about that is:

So a priest, a rabbi and a duck walk into a bar....   

Thursday, April 26, 2012

Back on Land

My nephews Drake and Grant give me a hard time about my texting habits. Apparently I initiate conversations and then, after a few texts, I just fade away. It's like I'm done talking, even if they're not. I had NO clue that I do this to them.

I'm there, and then --  in an instant -- I'm gone. I'm not sure why I slink away, but I do. So I'm trying really hard to finish conversations and not leave anything unsaid -- and I'm taking that same approach to this blog. And trust me, it's not always easy to share the complete story.

About a month ago I posted that I'd been feeling woozy. This was something entirely new, and it scared the crap out of me. I went to U-M twice but each time left with more questions than answers. There was no inner ear issue. It wasn't my medications. During the second visit my doc examined me and then said "well, it wasn't a stroke." A stroke? I know that kidney disease puts me at a higher risk for stroke, so the mere mention of the word was scary.

More time went by, and my symptoms remained. I felt like I was rocking on a boat, plus I had major stomach issues. And there was no obvious answer as to why. This wasn't related to my kidney disease, but it had to be caused by something.

I was sleep deprived, cranky, frustrated, angry, and tired of feeling woozy.

That's when I had my epiphany: this had to be psychological. I've been under an intense amount of stress, and I wondered if these symptoms were the result of stress manifesting itself physically. As I read and researched more, it became obvious that my symptoms sounded an awful lot like anxiety. So I created my own course of action:


Guess what? I'm now back on land. The symptoms have slowly gone away, and I'm back to feeling normal (or, at least normal for me!). I'm so relieved -- not just because I feel better, but because I was able to know my body well enough to know what it needed.

So that's how the "woozy" story ends.     

Monday, April 23, 2012

More Morbid Humor

Anything kidney related gets my attention. I was looking for something to watch the other night when I noticed that "American Dad!" was airing an episode called "The Kidney Stays in the Picture." I had never watched the show before (it's an animated sitcom on Fox), and found it both hilarious and wildly inappropriate.

In one scene, Roger (an escaped alien from Area 51) explains how kidneys are removed: 

"You know how they take kidneys out? You’ll walk into your room and there will be plastic sheets all over the floor. Before you can react, a man in a ski mask will tie you to a chair with an Indian braided belt he got on vacation in Santa Fe. He’ll turn on some Huey Lewis. And then cut the damn thing out with a rusty keyhole saw. No antiseptic, no Novocain, no nothing! Just the song “Hip to be Square” drowning out your boyish screams."

The show ends with this little gem. (That's Roger holding the saw, channeling his best American Psycho.) Enjoy the morbid kidney humor!

Wednesday, April 18, 2012

May 6

You're familiar with the modus operandi of drug pushers, yes? The first few hits are free. After that, it's time to pay up, baby.

I fear I'm emulating that M.O. here. You know -- create a little blog, entertain the readers, get them to come back, and then -- WHAM -- ask for something in return.

Yesterday I realized that there's a Kidney Walk in Grand Rapids on May 6, 2012. I've formed a team -- Giffy's Kidneys -- and will be participating in the walk that day. Raising money is part of the drill.

Please consider going to the Giffy's Kidneys team page at the National Kidney Foundation of Michigan website. You can either join the team or make a donation on my behalf.  Just enter "Giffy's Kidneys" in the team name search box and it will take you to my page. The walk is a small event but what it represents to me is huge. It took me awhile to openly talk about having kidney disease, and those months of silence were scary. Now I'm ready to talk, listen, learn, educate and advocate. I figure that I must have kidney disease for a reason -- meaning I'm supposed to do something positive with this thing. The Kidney Walk is an initial step (pun intended).

Thanks to those who can be there in person on May 6 and to those who will be there in spirit. It's going to be a fun day!     

Monday, April 16, 2012

Under Pressure

Everyone has the same question for me:

"How will this disease progress?"

Unfortunately, there is no clear-cut answer. The doctors just don't know. I do have proteinuria -- excess serum proteins in the urine -- and that is a proven risk factor for the progression of kidney disease. That's why the focus is on stabilizing the protein loss and keeping my blood pressure under control.

I've never had high blood pressure, so it seems strange that blood pressure monitoring now plays such a big role in my life. Every day I take 20 mg of Lisinopril, wear my stylish little BP cuff, chart my numbers, and hope for stability. Dr. Harder wants me to be at 125/75 and recently asked me to track my BP for two weeks and report back. Here's how I did:

March 21  112/68 (pulse 73)
March 22  121/76 (pulse 74)
March 23  111/74 (pulse 78)
March 24  128/82 (pulse 66)
March 25  115/75 (pulse 78)
March 26  120/80 (pulse 88)
March 27  118/75 (pulse 73)

April 2       110/74 (pulse 75)
April 4       130/86 (pulse 73)
April 5       108/70 (pulse 67)
April 6       107/69 (pulse 71)
April 7       114/69 (pulse 73)
April 9       114/67 (pulse 80)

I'm doing well, especially considering I'm failing miserably at the low sodium diet. I was at a Detroit Tigers game recently, and I wanted a hot dog. Or a salty pretzel. Or popcorn. Everywhere I looked I saw -- and craved -- salt. Lowering the sodium in my diet remains a challenge for me.

I think I'll save that battle for another day. ;)

Saturday, April 14, 2012

The Good News is...

I recently had a large whiteboard installed in the office. It's about 6' x 4' and I use it to visually track the various projects my team is trying to juggle. It's in a common area, so many times when I'm writing, the staff will gather around to see what I'm doing and learn what projects are next. The other day, I had just finished filling up the board when someone said:

"Look how your writing slants upward. You're an optimist!"

That sent me Googling, and sure enough, my writing style does reveal me as an optimist. I do find handwriting analysis interesting, but most of all I was relieved that it didn't expose me as a raging lunatic. I mean, what if the scenario played out this way:

"Look how your writing [insert whatever style here]. Man, how do you get through the day? You're a mess!"

Being an optimist serves me well. I have no idea how my kidney disease will progress, but I'm confident that I can handle anything that's thrown my way. A very dear friend introduced me to the concept of "trusting your journey," and I have embraced that saying and all that it represents. True, I'm bummed out about all of this. I won't lie. But whatever happens is going to be OK.

Monday, April 9, 2012

How Can I Help?

A little over a year ago, my therapist mentioned a book called "Share the Care." This came up in conversations about my father's declining health and my mother's incredible commitment to advocating for and taking care of him. I was worried about him, of course, but was also worried about her.

I haven't purchased the book, but the premise is: You don't have to do it all alone. The person with the illness doesn't have to do it alone -- and people who care for loved ones don't have to do it alone. The best strategy for success is having a group of people who form a caregiving team. The link here explains this in a bit more detail.

I've been thinking about the "share the care" concept a lot lately, especially since my kidney disease has progressed and my energy level feels depleted. Friends and family members often ask "how can I help?" -- yet I've been reluctant to give a useful answer. I'm working on that. I'm trying to be more honest and authentic with how I'm feeling and what's in my best interest. That's why I offered to host Easter this year. It seems counterintuitive, I know. Isn't that just inviting stress? Maybe. But the last thing I wanted to do was travel. So I hatched a plan, worked ahead of time, and asked for help. And then, of course, my family helped in ways ranging from junk removal to room organization to sous chef work. They were amazing, and I am blessed to have such a great support team.

Remember gym class, when they used to pick teams? I never had a problem with this scenario, because I was either a captain who was doing the choosing or, if not, I was the first girl picked. A few of the females in my family had a different experience, though, and have expressed how they hated this aspect of gym class. It's nothing more than a bad memory to them.

So I want to say this to Lori, Danielle and Chris: I would pick you to be on my team any time -- and I would pick you again and again. You helped me so much this week and made it possible for me to be in my own home and not have to travel for Easter. Thank you for that.

Ray and Ethan helped with projects around the house, and Rob even did dishes. Jack-a-lacka!!

My mother helped just by her sheer presence. She is so strong and positive and always makes things easier for me. Patrick helped me by making me smile -- I'll always remember him jumping up and down when Avila hit the walk off HR. I didn't think he had "ups" like that. :) 

And then there's Grant. Like the junk guy said, "I didn't think they made 17 year olds like that anymore."

I realize how lucky I am.       

Thursday, April 5, 2012

Almost Famous

It's time for Fun with Kidneys! The following famous people all had kidney disease:

Wolfgang Amadeus Motzart
Emily Dickenson
Bobby Fischer
Erma Bombeck
Julia Child
Barry White
Cole Porter
Buffalo Bill Cody
Chester A. Arthur

They all led pretty productive lives.

So will I.

Monday, April 2, 2012

The Itchy and Scratchy Show

Rob recently asked me when my symptoms first appeared. I usually try to ignore Rob, but there was a good chance he was going to buy me dinner that night, so I played along and continued the conversation. (Oh, kidding! I'm just trying to entertain Nell.)

Kidney disease is known as the silent killer because by the time you realize you have it, lots of damage has already been done. I like to refer to it as the sneaky stealth bastard disease, but that's just a personal preference.

The first alarming symptom was blood in my urine back in June 2005. It was right before I went to Grand Teton National Park, and my test results were due as soon as I got back from vacation. At this point there was no protein, only the blood (microscopic hematuria), and so I was being seen by a urologist who was screening for bladder cancer. I had to be tested every three months, had three invasive procedures, and wasn't having a ton of fun. Then my urologist retired, closed up shop, and mailed me all of my medical records. Since he didn't hand over my case to anyone, I just stopped going to the doctor. Not smart, I know, but I just wanted it to go away.

Within a few years my fatigue started getting progressively worse, and again doctors chased random stuff -- even having me do a sleep study to see if I had sleep apnea. No one was thinking kidneys.

There was also another symptom that appeared around 2007-2008 that baffled me: the itching and scratching. It happened every time I exercised. I'd start running, the blood would begin pumping, and then like clockwork I'd start itching like crazy. I scratched like a crystal meth addict convinced that there are bugs in her skin. The intense itching only subsided when I stopped running. I'm sure I drove friends nuts, because I always had to bail from the workout. Now I know that this was one of 10 common symptoms of kidney disease. It makes sense. My kidneys are not able to clear the waste from my bloodstream, so my blood is filled with toxins that make me itch.

At the time, though, I was looking OUTSIDE my body and was sure it was detergent or body wash that I was somehow allergic to, and I cycled through dozens of products trying to find something that would make me itch less. I swear I tried every bar soap that Target carries.

So my first symptoms were little things that didn't seem to connect:
  • blood I couldn't see
  • fatigue that wouldn't relent
  • itching I couldn't explain
It was out of frustration and desperation that I made a rheumatology appointment at U-M, and it was Dr. Monrad (a total rock star) who very quickly ran all of the key kidney tests and referred me to nephrology. It was the first time someone took the time to look at everything and make sense of it all. She is my hero.