Chrysanthemum Blossoms

My blood test results are back, and everything seems to be status quo. The doctor ran eight tests and all of my results fell within normal ranges. There were several deviations from September -- some were higher, some were lower -- and that led me to Google and to try and figure out what these fluctuations may mean. I am the poster child for cyberchondria. I am Sheldon Cooper (Big Bang Theory), having abdomen pain and coming to conclusion that I'm dying due to accidental ingestion of chrysanthemum blossoms. (Watch Video)

I have no idea why I obsess and try to research everything, but yet there I was, typing in test names and trying to make sense of test results. And then I thought of Sheldon, and I realized how ridiculous I was being, and I stopped.

My doctor never called, so I'm not worried. :) 

Sheldon Cooper appendix

Trending

I was told that I'm trending. That would be kind of cool if we were talking about Twitter.

It would also be a miracle, since I have 20 followers and tweet about once every 18 days.

The quote was "you're trending up" and it was from my nephrologist, who called to discuss my latest protein/creatinine urine ratio. She then ordered more labs, and I had blood drawn on Jan. 18. I expect to have those results early in the week.

What does this mean? The goal all along has been to try and slow down the progression of my disease. The increased protein/creatinine urine ratio shows that the current course of action isn't as effective as the doctor and I had hoped it would be. The next treatment step would be something more aggressive, like suppressing my immune system -- and that wouldn't be done without another biopsy.

Looks like biopsy #2 will soon be a reality. 

You've Got Questions

I thought I'd compile a list of some of the questions I've been asked over the past month:

Q. When are you going to update the blog?
A. I’m doing so right now! Follow along!

Q. Does a quiet blog = a busy life?
A. Nope. A quiet blog = a dead home computer. It’s about 1995 in my house right now.

Q. When are your next medical appointments?
A. My next rheumatology appointment is Feb. 4 and I see my nephrologist on March 25. But I'm going to U-M for lab work on Monday, Jan. 14. This is to monitor the amount of protein in my urine and to see if the higher dosage of blood pressure medicine is making a difference. I'm very curious to see the results.

Q. How are you feeling?
A. In a word, encouraged. My energy level is the highest its been in a long time. I think the alternative therapies (acupressure, acupuncture) are contributing to my improved overall health. I am sleeping well and have learned the art of getting enough rest.

Q. Are you running?
A. No. I go for walks every day and have a new pedometer to track how much walking I do at work every day. But that's about all for now.

Q. Do you think you'll try another 5K?
A. Definitely. I haven't chosen one yet but will look for a race in June or July. That will give me enough time to prepare. The hard lesson from my September 5K was that I'm not the athlete I used to be, and running a 5K is fairly taxing on my body. So I want to make sure I train properly. I could use training partners so if anyone wants to run with me this spring, please let me know.

Q. Are there any National Kidney Foundation of Michigan events coming up?
A. There's a Kidney Walk in Grand Rapids on April 28 that I'm thinking about doing. I will be making a decision in the next month or so and, if I'm participating, I'll announce it on the blog.

Q. Why do you park in a driveway and drive in a parkway?
A. Dad? Is that you?

Who's Counting?

My nephrologist has me on a strict low-sodium diet: 1,500 mg a day -- which equates to less than one teaspoon of table salt. The diet is challenging but doable at home and nearly impossible when dining out at a restaurant. Do you realize how much sodium is contained in most restaurant dishes? It's unreal. 

Luckily, many restaurants have websites with easy-to-use nutritional calculators so that I can plan ahead. That's what I did the other night, when it was 7:30 p.m., I was still at work, and I knew I was never going to make my one-hour commute home without stopping on the way. I was determined to make a good choice, but I also wanted what I wanted. And that was Chipotle. 

I used Chipotle's calculator like a mad scientist, making choices, changing ingredients, and doing everything I could to keep my desired meal under 1,500 mg. My sodium count for the day was miniscule, thanks to Kashi Whole Wheat Biscuits Cinnamon Harvest sodium free cereal for breakfast and leftover baked chicken for lunch (no sauce or dressing).

My choice: a burrito bowl with rice, black beans, fajita veggies, sour cream, cheese, guacamole and tomato salsa that checked in at 1,490 mg. I should have ditched the salsa and the guacamole, but where's the fun in that?

I was over my sodium count for the day, but no one had to know. It would be my little secret.

Until my nephrologist walked into Chipotle and stood in line with her husband, about two feet away from me. I wanted to curl my arm around my burrito bowl, draw it close to me, and say, "Eyes up here, lady. No looking at the bowl." Or scream "FIRE!!" and hope she sprinted out before seeing me. I was having a hand-in-the-cookie-jar moment.

My panic was fleeting, thankfully. She immediately recognized me, gave me a big smile, introduced me to her husband, asked how I was feeling, and then went about her life. And I went about mine. 

She never once looked at my bowl of food.

And I enjoyed every bite.   

West, Meet East

I'll never forget the day my brother Rob channeled his inner Mike Rowe.

Now, these two men will never be confused. Rowe is the host of the Discovery Channel's Dirty Jobs, a show that profiles laborers and some of the greasy, grimy, and sometimes disgusting jobs that are necessary in our economy. My brother has the personality to host his own TV show, but all of that mess and dirt? Not a chance.

Hint: This is not my brother.

One day, Rob was telling me what he would do if he lost his job. He listed job after job that he would happily take -- all "Dirty Jobs" worthy -- if it meant providing for his family. I vividly remember our conversation because A.) he's not Mike Rowe-ish and B.) he was so earnest. He meant every word.

Mostly, though, I remember the conversation because I couldn't relate. I couldn't comprehend the drive and motivation to provide for a family. To feel a sense of obligation to others. To be willing to try new things and let life take me down a different path.

I used to think that the reason I couldn't relate is because I didn't have kids, and if I did, well that would change everything. Those kids would be the reason I would push and push and not give up. Those kids would make me scratch and claw and fight like crazy.

Turns out I was wrong, again. Having kidney disease has made me realize that I do have someone to fight for: ME. Somewhere along the line I lost sight of that. The disease has motivated me and awakened a resilience that I didn't know I had.

I do have an obligation, and it's to myself. And I owe it to myself to do whatever is necessary to feel better. That's why I am now embracing alternative medicine. I started supplementing my traditional western medicine treatment plan with a more holistic approach and now see a doctor who uses acupressure and focuses on my body's energy channels. It sounds kooky, but it's working. I've had several treatments and have noticed an improvement in my overall health. I don't feel so tired (the brain fog has lifted), and my stomach issues have subsided. I already knew that my body responded well to acupuncture, so it's not that surprising that the acupressure is working.

My favorite thing about this treatment is that it's drug free and doesn't interfere with anything that my U-M doctors are doing for my kidneys.

It feels good to be able to take care of myself this way. I can't control what's going on with my kidneys, but I can step up and do whatever it takes to keep myself as healthy as possible. 

Journeys

I was reading an article by ESPN.com columnist Scoop Jackson and was struck by his lede:

"Journeys. If we are honest with ourselves, we know that they never really begin where we think they begin and they hardly ever end when we think it's the end."

Jackson was writing about "Benji," a compelling 30 for 30 documentary on the life of Chicago basketball star Ben Wilson. (I highly recommend both the article and the documentary, by the way.) Jackson's sentiment about journeys had me nodding up and down in complete agreement. We really don't know where our journeys begin, and we rarely know or recognize when/if they're complete.

I often think about my journey with kidney disease. When did it begin? Was it the day my primary care doctor first flagged the blood in my urine? At the time, kidney disease wasn't suspected, since I didn't have any protein loss.

So was it a few months later, when the protein loss appeared?

IgA nephropathy can be familial. Was I born with this?   

Here's another theory: The antibody IgA (Immunoglobulin A) is found in the body's mucous membranes (respiratory passages, gastrointestinal tract, saliva, tears). It is thought that the body may produce too much IgA when fighting off an infection. IgA nephropathy sometimes appears after a major illness. Did my journey start in 1997, when I had a serious infection that left me hospitalized for eight days? Did that trigger my disease?

Or did my journey start the day I finally admitted I had kidney disease, stopped feeling sorry for myself, and started being an advocate? Was that the beginning?

All of this musing has led to an epiphany of sorts: IT DOESN'T MATTER. It doesn't matter what caused my disease. It doesn't matter how it ends. What is most important is the here and now. My journey is my journey. I don't have to figure out what it all means. I just have to trust. And live.  

Going Cold Turkey

I'm on Day 2 of a fairly intense head cold, and frustration is mounting. Headache, sore throat, runny nose, sneezing. My medicine cabinet is full, yet utterly useless.

Having kidney disease means not being able to take over-the-counter analgesics like aspirin, acetaminophen, nonsteroidal anti-inflammatory drugs (ibuprofen, Motrin) and naproxen sodium (Alleve). All of these common pain relievers can be harmful to the kidneys; there is actually a form of kidney disease -- analgesic nephropathy -- caused by the overuse of these types of meds. My nephrologist has banned them all. Also on the "no-no" list are popular cold/flu remedies like Sudafed, DayQuil and NyQuil. There is not a single over-the-counter medicine that I've been cleared to take.

What am I supposed to do instead?

Rest, eat well, and drink a lot of water. In other words, what my Mom told me when I was a kid. :)

Here's hoping that I'm back at it soon.