Big Weekend Just Got Bigger

I now have a second reason to look forward to the weekend of Sept. 8-9:  my friend Trish has put together a Giffy's Kidneys team for the Ann Arbor Kidney Walk! The walk is on Sunday, Sept. 9 at 1 p.m. You can donate on line or join the team and walk with me. :)

So that's the 5K run on Saturday and then the Kidney Walk on Sunday. The fact that I have enough energy to do both of these things -- in the same weekend -- is very encouraging.

I feel renewed.

"We turn not older with years but newer every day." - Emily Dickinson

   

Giffy by the Numbers

Here are a few interesting numbers from the last week:

14: Minutes I'm now able to run without stopping. My latest workout was 2 minutes walking/14 minutes running/2 minutes walking/14 minutes running/2 minutes walking.

2:  Number of siblings who are running with me in the Allegiance Race to Health 5K run on Sept. 8.

120:  My average systolic blood pressure last week -- exactly the number my doctor wants me to maintain.

3:  Number of times I forgot to take my meds this week. OOPS! This will definitely be an area of emphasis for the coming week.    

Why I Laugh

From Davita.com:

"In late 2006, The International Journal of Psychiatry in Medicine reported that people with severe diseases, such as chronic kidney disease, have better survival chances if they have a sense of humor and can laugh easily. The study was performed by scientists from the Nor­we­gian University of Sci­ence and St. Olav’s Hos­pi­tal in Trond­heim, Nor­way, on people with end stage renal disease who were on dialysis. According to the results, people who scored higher on having a sense of humor increased their odds for survival by about 31 percent."

On Track

About a month ago, I announced that I would be training for a 5K run. Such a public declaration was a bit bold, considering that at the time I was only able to run two minutes without stopping. I've only posted once since then, so if you're thinking that I'm avoiding the topic because I'm not training, you would be..........WRONG!

I am now up to eight minutes of sustained running. My current program is a 2-minute walk followed by an 8-minute run -- repeated 3 times. It's slow and ugly, but it's working! I do this on Wed/Fri/Sun.

The 5K run is Saturday, Sept. 8, so I have another month to prepare. Race information is here in case anyone wants to run with me or come and watch. So far I think I have one fellow runner who will be by my side, my sister Denise. She has qualified for the Boston Marathon before -- so she's a real runner -- but how cool that she's willing to plod along with me for a few miles!

Learning about Dialysis

I visited a dialysis center for the first time. I wasn't sure what to expect, and I was definitely nervous, but it was an important day for me. And it was completely humbling, since I was there with eight kids who showed a type of bravery and dignity that sometimes escapes me.

I was up in Flint visiting a Kids Camp put on by the National Kidney Foundation of Michigan. The Foundation makes it possible for 25 kids with kidney disease to go to camp each summer, and I was there to see the camp in action. The kids who are on hemodialysis leave camp twice during the week for treatment.

What struck me:

• The way the Davita staff interacted with the medical team from the camp -- a U-M doctor and a nurse from Children's Hospital of Detroit. They were true pros.  
• The different vascular access points the kids had. There were arteriovenous fistulas, arteriovenous grafts and one venous catheter.
• The way the kids knew the routine and could answer all of the questions the staff asked about their specific treatments. This center typically serves adults -- not kids -- but everyone collaborated beautifully so that these treatments could happen.

As I stood there and observed, my knees were a bit wobbly, and my breathing was shallow. I won't lie. I've been very afraid of dialysis. Will I ever need it? And if I do, what type of treatment would be best for me? I may never get to the point of needing to make those decisions, but if I do, I hope I handle it as well as those eight kids did. They reminded me that courage doesn't always roar. Sometimes, courage is quietly doing what you need to do, even though it's not all that fun.       

I'm Going to Walley World

There's a scene in National Lampoon's Vacation (1983) where Clark Griswold (Chevy Chase) stands at the edge of a hotel pool -- naked -- contemplating what he's about to do. His wife and kids are back in the room, yet he's moments from jumping into the pool to skinny dip with a woman, played by Christie Brinkley, that he just met on the road.

He swings his arms wildly in front of his body and manages to say, "This is crazy. This is crazy. This is crazy." before jumping into the water. Like most events in the movie, it doesn't end well for ole Sparky.

I've had my share of "This is crazy." moments in my life. Some were borne of peer pressure. Others were the result of stupidity. And a few were because I thought I was invincible.

Example: In 2009 I ran a half marathon (13.1 miles) without training. I was out of shape and had no business pushing my body that way, but a friend said "hey you should run this race seven days from now" and I somehow thought it was a great idea. On race day, I stood at the starting line, thought "this is crazy," and then made it the entire 13.1 without walking. I hadn't been diagnosed yet, but I was going through testing and knew something was wrong with me. I think I ran that day to prove that I was OK -- to show myself that I was still me. 

I tried another half marathon later in 2009 but it was a complete disaster, and I haven't run since. My big news: I signed up to run a 5K in September. I'm medically cleared to do this, but that doesn't diminish my nervousness. Right now, I can only run in two-minute intervals before transitioning into a walk. I'm following a training program designed for people who have never run before, because that's my new reality. I need to forget my athletic past.

The race is in Jackson, Mich., and while it's not as close to home as I would have liked, I chose it for three reasons:

1. I need a race with a big field. Races close to where I live are smaller, and that means there's a good chance I could finish last. Who needs that kind of ego crusher? 

2. The run is hosted by a hospital, Allegiance Health, and is part of a family wellness day. I like that. And I like knowing there will be lots of doctors and nurses around!

3. I spent eight days at this hospital back in 1997 with a bacterial infection that most likely caused everything I'm enduring today. This needs its own blog entry, and I'll try to get to that soon. But I really like the idea of running on the same site where I was once so sick.

The race is September 8, 2012, and although it's only 3.1 miles, I'm having a bit of a "this is crazy" moment. Can I do this? Am I healthy enough to train? I think these things, yet all I want to do is jump into the pool and take my chances. When Christie Brinkley asks, "are you gonna go for it?", the only reasonable answer is yes!

I can think of two ways that friends and family can help me achieve my goal:

1. Consider running with me or being there that day to cheer. Race information can be found here.

2. Consider training with me. I will be running on Wednesdays, Fridays and Sundays. Join me! Let me know if you're in town, and help me get prepared for this race. I need every push, every good vibe, and every ounce of energy I can get. 

Cheering for Venus

Tennis star Venus Williams has won Wimbledon five times, yet when the 2012 tournament started last week she was bounced 6-1, 6-3 in the first round. Just like that -- she was done. I've always liked watching Venus play, but I really started cheering for her when I learned that she has an autoimmune disorder called Sjogren's Syndrome. Diane Pucin of the L.A. Times wrote that the disease "can leave her [Williams] feeling lethargic even when she has rested and eaten well and treated her body as if it is a precious heirloom. But the thing about precious heirlooms is that they can't just be taken off the shelf, dusted off and made new again."

I had never heard of Sjogren's (SHOW-grins) until my rheumatologist had me tested for the disease last year. I didn't want to do the test -- I was sick of tests and the accompanying poking and prodding -- but I think my rheumatologist is brilliant, so I agreed. She ordered a lip biopsy, and it was about as fun as it sounds. A doctor numbed my lip, made an incision inside my mouth, and then used tweezers to pull out about 5-7 tissue samples from my salivary glands. I cried -- not because it hurt, but because I was scared. All of the testing takes it toll emotionally.

I've lost track of how many diseases I've been tested for over the past five years. And most of the tests aren't  "one and done" -- I repeat them every six months, or every year, or whenever something else weird happens with my body. My case is challenging because I tend to show (and test positive for) different things, yet I don't always fall neatly into a diagnostic category. That's the case with Sjogren's. My test result was, in fact, positive. But, since I was on the "low end" of the testing scale, I didn't receive an official diagnosis from UM. I tested positive, but all that the doctors are willing to say is that I have Sjogren's-like symptoms. I take 400 mg of Plaquenil a day as a result.

My kidney disease, IgA Nephropathy, is also an autoimmune disorder, and the UM doctors aren't sure how the IgA and the Sjogren's fit together -- if they do at all. But I'm glad I'm in a healthcare system where the doctors collaborate on my care, and I'm sure they'll figure it out in due time. And I'm so focused on my kidneys that I never even think about the Sjogren's -- that is, until there's a major tennis tournament. Then I remember, and I watch Venus, and I hope that she wins!