Monday, December 9, 2013

NaNoWriMo 2013 Recap

Is it me or is this getting easier?

I've done National Novel Writing Month six times now - not including the failed Camp NaNo attempt this past summer that never really got off the ground. This was my third year winning and the first time I not only finished the 50K word count but also finished the rough draft of the novel I had started. It was also the easiest attempt in my memory. I have a theory about why...

Is it because I had already completed a rough draft of my first novel and know how to get to "The End"?

Is it because I have used all these years to build a habit for daily writing - at least during November?

Is it because I planned ahead this time with character studies and a plot outline before November hit?

I think it has a lot to do with all three of these key elements.

This November was not the perfect month to pick to impose this crazy deadline on myself and life threw even more wrenches into the works. I was too tired on Halloween to stay up past midnight and write a couple thousand words to start off with a buffer like I always have before. Little Sister (who is now three) came down with a nasty flu at the end of week two and I had to hold her while she suffered with high fevers for a solid week. The only time I could write was while she was drugged and sleeping. Then one night of planned house guests a couple of days before Thanksgiving turned into three days and I could only write after everyone had gone to bed - much later than a normal night.

With all of that plus the craziness that always comes with my life anyway, I still managed to write every day except three over the course of the entire month. And I hit the daily word count goal an average of four days every week. I caught up little by little on the nights I wrote well and spent the weekends holed up with my laptop while my family tried to manage itself without me at the helm. Big Sister did her own laundry to help out a couple of times, and my amazingly supportive Hubby did dishes and grocery shopping all month and even cooked huge meals on the weekends when there was more time so we could eat reheated leftovers during the week. As a result, I only stayed up past midnight once the entire month - very unlike any of my previous winning attempts. And, I was DONE EARLY and enjoyed a celebratory date night on November 30th which was super strange. Usually I'm frantically clawing for word count to validate my novel with minutes to spare in the wee hours before the 30th comes to a close.

So how did I really do it?

  1. I spent all of October fleshing out characters and plot points so all I really had to do in November was write the story I'd already thought through. Of course I got halfway through and realized the plot was far too elaborate and my characters had gone and gotten us pretty far off course so I had to rethink the ending but that wasn't as hard as I imagined.
  2. I invested in software especially designed for writers that made managing my plot a breeze. (If you haven't checked out Scrivener, do yourself a favor and do. It is super affordable and once you start using it you are hooked.) This allowed me the flexibility to write those scenes I'd planned to happen in the order I was inspired to write them rather than how I planned to lay them out. Keeping the creativity juices flowing made the actual writing so much more effortless.
  3. My family and all my friends were on board and supportive of my efforts. This is huge and I can't stress enough how important it is. Writing is like having a job and if you want people to take you seriously you have to treat it as such. My family knew that I had scheduled the time after the kids went to bed at 9:00 until midnight every night to devote to writing and then large chunks of each weekend as well. Friends supported me from afar and didn't extend invitations they knew would tempt me from my writing.
  4. I didn't deprive myself entirely of those things in life that keep me grounded and happy. All three of the days that I didn't write were nights that I used wisely. One night I spent with Hubby; one was an impromptu night of laughter, tears and wine with a friend that went further in recharging my batteries than I might have imagined before I spontaneously threw caution to the wind on a whim; and I didn't write on Thanksgiving. I still did yoga three to four days a week. And I still went to my monthly book club. I could do these things because they helped me stay focused on maintaining the daily word count when I was writing so I could slow and steady win the race.
  5. I wrote every day (with the noted exceptions above) whether I was inspired to do so when I sat down or not. This made it so I didn't ever get so far behind that I had to do massive feats of will (or caffeine) to write enough to catch up. Remember the last time I won when I wrote something like 18K in the last five days? That was insane and I swore I would never do it again. Instead, I never got more than about 3K behind the 1667 words a day pace and was able to keep the goal easily within sight. It seems like the simplest and silliest writing advice anyone ever gives when they say "Just write" but that has boiled down to the key for me.
This year was noteworthy because all four of us in my amazing writer's group finally did NaNoWriMo together. Most of us have attempted it at some point or another over the past six years but this was the first year that all four of us planned ahead and were poised to participate at the same time. It was amazing to have each other for support and everyone agreed - win or lose - that we learned something AND wrote more than we would have if we didn't participate. Everything is better with friends to lighten the load and ease the pain, to share the excitement and the milestones, and to lament the frustrations that come with any worthwhile endeavor.

I'm taking the month of December off to celebrate the holidays and reconnect with my family. And come January I will again embark into uncharted territory when I begin the process of editing my rough draft from the messy, grammatically incorrect, tense-switching, inconsistent and full of plot holes state it currently is into something worthy of submitting to agents and publishers. It is sure to be a wild ride!

Sunday, December 1, 2013

I did it... again!

There is a pattern emerging... I do NaNoWriMo every year but I only win every other year. This time I finished six hours before the deadline (a first). I ended up on a date with Hubby that night feeling guilty that I was out in the world enjoying myself when it was still November (gasp!). I'm taking the weekend off from writing... a rest I fully deserve. Then I'll recap for your reading pleasure, as always!

Friday, November 8, 2013

A Day in the NaNo Life

It struck me this week how life throws so many curve balls especially in November. I appreciate the challenge that this seemingly insane deadline offers in and of itself and how it is designed to take my "someday I'll be a writer" dream one step closer to reality with solid work habits when it comes to writing. Because that's really what doing NaNoWriMo is about for me. But what if your life is completely insane already and then you try to add something like writing an entire novel in a single month onto your plate? You get a day like what I had yesterday which I will now recap for your reading pleasure...

12:30 am - hit the sack for some shut eye after falling asleep over my keyboard and throwing in the towel for the night.

12:30 - 5:30 am - slept like a baby. (Don't hate me that I fall asleep the second before my head hits the pillow every time.)

5:30 - 5:45 am - claw myself awake, chat with hubby while snoozing my alarm clock

5:45 - 6:00 am - scramble out of bed in a panic, throw on clothes, brush teeth and head for yoga

6:00 - 7:15 am - yoga

7:15 - 9:30 am - get kids up and moving, shower, herd cats kids toward morning routine completion, get both off to school/dropped off at daycare

9:30 am - 2:15 pm - work the day job from my home office. Grabbed lunch on the go between phone calls and ate at my desk.

2:15 - 3:10 pm - parent/teacher conference with Big Sister with a side of book fair to suck more time I don't have from my day. But she wants to read so how can I not?

3:10 - 3:30 pm - more cat herding to get Big Sister ready for dance and dropped off while Hubby picks up Little Sister from daycare

3:30 - 5:30 pm - work the day job

5:30 - 8:00 pm - family dinner to celebrate my Mom's birthday. Tried to enjoy family togetherness without stressing about how far behind in my word count I already am and how I can't afford to be there having fun.

8:00 - 9:00 pm - bedtime cat herding routine and kids tucked into bed

9:00 - 9:30 pm - coffee brewing and Facebook and chasing Little Sister back to bed

9:30 pm - 12:00 am - dedicated writing time which I also filled with unnecessary Facebook browsing because the writing isn't flowing and hey, look, someone commented on my post! (Admitting you have a problem is the first step, right?) An hour in I cut off my connection to the internet and tried not to obsessively need to update my word count online after every paragraph...

12:00 - 12:30 am - compose blog because it is all fresh on my mind, I don't want to try and capture this later plus the two cups of coffee I consumed during my writing block just kicked in and I'm not tired now. In fact, I'm kind of giddy and I need to do something or I'll post ridiculous (and giddy) Facebook status posts that no one else will think are as funny as I do because I am beyond looney at this point of the night and wired on caffeine and sugar. WHEE!

12:30 - 12:45 am - hit the sack, because even though I probably could stay awake and catch up the fifteen hundred words I'm behind, if I don't get some sleep there's no way I can function tomorrow at work.

There you have it - a day in the life of my November this year. Part of me wonders if I really have it more crazy than other people or if I just like to think of myself as different than most. I also found myself thinking about how if this "someday I'll be a writer" dream were to come true, there will certainly be a time where I could be a published author but not making enough money to quit my day job. In which case, this is what my life every single day would look like - only hopefully less addicted to Facebook. In moments of weakness, part of me wonders if I really have it in me for more than a month... but I keep writing anyway!

Monday, October 28, 2013

Celebrating non scale victories

I've talked before about how the number on the scale is just that - a number. And my favorite proof of how my fitness level and body are improving is in how my pants fit. I follow a fitness blogger on Facebook who calls these things 'non scale victories' and talks about how important they are to celebrate.

I feel like my head was removed from my ass a fog has lifted now that my attitude about my health is back to a normal and healthy one. I've returned from the brink where I wallowed in crap I can't change and am focused again on being fit and healthy; measuring my successes rather than just surviving every day. My routine for years has been to track scale weight as well as measurements so I can go back and compare progress and where I was at each different point in my weight loss and fitness journey. Probably no surprise that I haven't done measurements in well over a year. I struggled with massive water retention and swelling in the beginning of all my kidney issues and didn't really want to see the stark numbers of how all my efforts had been negated. I could feel it in the pants and knew how bad it was.

A couple of weeks ago I decided to suck it up and do measurements. If nothing else they could serve as a brand new starting point where I couldn't go anywhere except up from. Interestingly enough, I'm actually the same size I was right before I ran my last Ragnar over a year and a half ago. Really?! Another reason I love yoga! Without even realizing it I've lost all that extra nasty swelling and water weight and kept it off even without running for a year.

Already feeling pretty good about myself, a few days ago I was enjoying the crispness of a fall afternoon and needed a hoodie. I hadn't done laundry and there weren't many options available in the closet. Then I noticed this adorable, maroon, lightweight hoodie hanging there, beckoning me. I'd forgotten all about this beauty. I bought it to commemorate my last Ragnar - me and the rest of the thousands since they were out of my size. At the time I was determined not to need the bigger size ever again so I bought the smaller size and told myself it would be great motivation. Because I had so recently been surprised, I pulled it out on a whim and put it on.

Holy shit, it fits!!!

I danced around in my closet jumping in joy and excitement for a good minute - then looked in the mirror to survey just how well it fit. That little bitchy voice in the back of my head was saying 'just because you can zip it up doesn't mean it is worthy of leaving this closet'. But it looked great and I wore that thing for two days loving every minute of knowing it was a victory just to feel confident enough to leave the closet.

I've decided these non scale victories are even sweeter than the number on the scale getting smaller. After all, no one but me gets to know or see that number but everyone can see how cute I look in my hoodie! Here's to more victories in the near future. And if you aren't looking for ways to celebrate progress, start noticing. It is far easier to stay motivated to do the hard work of being healthy when you are seeing positive results no matter how small.

Monday, October 21, 2013

T-Minus Ten Days

It is almost November. That busy month where most people are gearing up for mainstream things like Thanksgiving and Christmas shopping and crazy writers like me are attempting what initially seems like the impossible: to participate and hopefully win National Novel Writing Month on top of all the things everyone else is doing. If you're new to the blog you may not understand the massive undertaking I challenge myself with every year for the past six. Writing fifty thousand words in the thirty days of November. Last year there were over three hundred thousand others globally who joined this challenge with me and I've heard this year is going to be even bigger.

I've been plotting and character developing since mid-September in preparation for writing the first draft of my next novel starting at midnight on Halloween. Have I got everything figured out yet? Nope. Am I worried? Nope. Am I secretly rejoicing that my health has improved so much that I feel almost one hundred percent like my old self so I can realistically imagine pulling late nights night after night and consuming massive amounts of coffee to keep me awake the next day so I have a chance in hell of winning this year? You bet your ass!

Have you thought of writing a novel but never did anything about actually doing it? NaNoWriMo is the coolest and best writing event to develop personal habits that easily translate to the rest of the year. No matter what the rest of the year looks like for me, I always know I'll be a writer who writes every day during November. And usually that habit persists well into the rest of the year. I haven't "won" every year but I write more every November than I would without this silly contest/challenge and that is all that really counts.

For more information and to join the party for free check out and register to join me! There is a real-life side to the online contest too if you want to meet other local writers at the kick-off parties or participate in write-ins in your area. My favorite part of registering is getting access to the word count statistics where I can obsessively and continuously update my word count and see the very real and uber-cool progress I'm making every day.

Tuesday, October 15, 2013

Today in other news

I just had the best weekend! I'm not sure if it is a self-fulfilling prophecy I'm living through or just a random coincidence but I'm feeling so great. Like I-almost-forgot-how-normal-life-feels great. Being present in every moment is a big theme for me now both because my brush with death put a different value on each moment there is and because there is so much about being present in the moment when practicing yoga. When a pose gets hard, you focus on just your breathing and let everything go while your muscles scream and that little voice in your head tells you it is time to be done with this pose thank you very much. Because of my awareness I find it easy to see trends within my own experience especially when they start to shift.

My amazing weekend started Friday night. I'm not sure if it was partly due to the large quantities of coffee I consumed Friday or just how good I felt but we watched two movies late in the evening and I only fell asleep halfway through the last one because it sucked and it was after one in the morning. I had to get up early for a blood draw Saturday so why force it for a lame movie?

Saturday I had some alone time while Hubby took the girls on a little Daddy-Daughter adventure and I filled it with shopping for groceries which morphed into deep cleaning my refrigerator before I could put things away. This was one of those chores that easily has fallen for the last year under the category of 'beyond the daily necessity' and therefore largely and very effectively ignored. As a result, I had all these random things that had accumulated on the rear half of most of the shelves with no room for the basics that come and go on a weekly rotation. How many open and half-used taco sauce bottles or jars of jam does one person need? And why can't they sell plum sauce in single-use size jars since that's the only size I am ever going to need? It felt so good to do something I know I wouldn't have had the energy for just a week ago and still feel like I could keep going.

All of these little things were nice but still kind of UN-noteworthy until Sunday morning rolled around. Even though I'd worked hard all day and was up late Saturday night to pick Big Sister up from a late birthday party, I woke up early. The first thought in my head was about going for a run walk and wondering if it was raining or if I had time to squeeze it in with everything planned for the day. I haven't awoken with thoughts about running in any form since probably January! Unfortunately it was pouring rain so I decided coffee was a better choice. But the fact that the thought was there was noteworthy.

Sunday's to-do list included two things and two things only: 1) Clean the house; and 2) Big Sister's Birthday Party. What this translates to is do all the dishes not just the ones that fit into the dishwasher, clear off all the crap that accumulates on the kitchen table over the course of the days and weeks of comings and goings and vacuum the floors if I have the energy so that my family and friends don't know how truly slacker I am when it comes to housework lately. What actually transpired was iconic. I ended up deep cleaning the kitchen including the dreaded top of the refrigerator and moving, cleaning and de-cluttering half of the place. Things that hadn't been touched let alone cleaned in months were discarded and others found new homes since they are no longer used regularly. But I didn't stop there. I had so much energy and felt like I was still on such a roll that I not only vacuumed, I MOPPED the floors. And not just the high traffic areas! I moved all the furniture and rugs and everything out. Something I haven't done full on in more months than I care to admit in public. When the party started I looked back on the fact that I had gotten up early, hadn't sat down for more than twenty minutes for that one cup of coffee first thing and still felt like hanging out and chatting with all our family and friends well into the night.

It wasn't just a fluke either... Today, I got up for my six AM yoga class like normal and then decided to do some upper body work with dumb bells while I was multi-tasking on a conference call this afternoon. That's two work-outs today before working hours were done. I haven't felt ambitious or energetic enough for that since before the Las Vegas Ragnar  in 2011 when I was running and lifting weights six days a week!

One could argue that none of these things by themselves are earth-shattering or even truly significant. But for me they add up to proof I'm feeling better and headed back to the land of living, fit people. What kind of things do you do everyday that give you the same sense of being alive and well or do you even notice these kinds of things? If you don't find yourself present in every moment of your day, you really should try it. You'd be amazed at what you can see when you're looking...

Thursday, October 10, 2013

Being Healthy

First, an update on my pity party pit stop. It is over... so don't worry that I'm spiraling slowly downward into the depths of despair which my melodramatic last post might have indicated. The lesson I'm choosing to take away from the past two weeks of roller coaster is that I should never never never blog when I start a new drug and am still trying to adjust and find the correct dose. I'm happy to report that this new medication is actually not that bad once my body got adjusted to it and it is already working since my protein loss is down again. We all know I'm not a patient woman - as if anyone needed more proof of it.

My joint pain is basically gone. Yippee! (I even found myself running up the stairs today!)
My headaches are a thing of the past. *knock on wood*
My stomach isn't upset anymore. Hurray!
And because of all of the above, I'm in super spirits. But that is not enough...

I had a very powerful conversation the other night that got me thinking - ironically the same night I posted about my pity party. For almost a year I've focused on entirely the wrong things. I say "at least I didn't die" as if my life is a bobbie prize to all of my experiences of late. I have been so hung up on all the things that have changed within my current reality instead of embracing all the amazing things I now have the opportunity to experience and accomplish. So I can't run anymore, who cares! Keep reading, you'll understand what I mean.

First reality check: I love yoga probably more than I ever loved running and if I were still running I wouldn't have the yoga practice (or the friends) that I have because I would still be trying to do both. Do I want to add some cardio back into my fitness routine? Sure. But will my life be incomplete if I'm not a full-blown runner anymore? No! Sure I have to start all over with walking before running but I already know exactly how to do that. Bonus!

Second reality check: It was pointed out to me by a niece who I rarely see but interact with on Facebook that all my photos of the last year show me far more glowing and happy than I was before all my current health experiences started. Despite how I feel day to day, my life IS better because I'm focusing on the people and things that matter the most to me rather than doing all the things that I "should" be doing instead. I gained a very healthy way of prioritizing things in my life and embracing spontaneity because I did almost die, I just haven't been thinking about things in the same way as I've been living. Instead I've been all up in my head dwelling on all the stuff I want to change which translates into exactly what I'm talking about here. Thoughts becoming actions and actions becoming habits as they say.

Nothing hit me in the face harder than when I ran into an old friend yesterday who I haven't seen or had contact with for over a year. We hugged and she asked me how I've been. The first words out of my mouth were: "I've been better. I've got kidney disease." Seriously, Terra? That's how you want to sum up your life and boil your existence down into one sentence? It kind of hit me like a ton of bricks when I walked away and thought about how saying that changed the entire exchange. You can't tell by looking at me that I have any issues going on. I have yet to miss work other than for doctor visits and the like. I've never been hospitalized except for one weekend afternoon I spent in the ER. And I could have said 'I'm great!' and still be telling the truth of my life right now. Why didn't I? Words are powerful as they say. Especially true when they are the words that little voice is constantly saying inside your own head undermining everything.

So, with my body healing and marching down the road toward remission in the next two months, I'm going to get back to BE-ing. Being present in every moment and every thought rather than dwelling on the past or how things could have been different for me. The only thing constant in the Universe is Change after all. I've always lived with no regrets so why start now regretting things way beyond my control? Being healthy by living everyday as a fit person who does yoga all the time and who feels amazing because there are no more excuses to be the vegetarian I always wanted to be yet never had the courage to commit to. Life is a journey full of lessons to learn and experiences to have. No one gets to pick all the things that come along on their path. It is what we make of those experiences and the meaning we attach to everything that defines how life goes for us.

Another friend shared a quote on Facebook this morning: "People wait all week for Friday; all year for summer; all life for happiness." I don't know who said it but I couldn't agree more. I've been waiting all year for health instead of celebrating how healthy I already am. I declare NO MORE and am living in the moment committed to loving my life to the fullest, being healthy and happy above all.

Monday, October 7, 2013

This blows or pit stop for a pity party

Okay, I know I said last post that I was only going to focus on the positives and all that happy rainbow and unicorn crap but that leaves me without my favorite outlet here to deal with the whole reality of my experiences and how truly shitty this new treatment plan is. Since its my blog after all if I want to change the rules then I get to. Right? The truth is, if I don't acknowledge and share the roller coaster ride with the downs as well as the ups I might go insane.

It's been a month with this new immunosuppresant drug and this past weekend I actually uttered the words "if this is how the next two years are going to be I think I'd rather have died." That sums up the very lowest of the low points of how I'm feeling. I waver between being so mad at everything and everyone and then in tears feeling like an imminent emotional breakdown. It really really blows. I think the worst part is knowing that I'm facing two years of this treatment. IF it works.

The irony of this new drug is that it is supposed to heal me and yet I feel like total shit. I'm tired - even more than I have been since this all started. I have headaches EVERY. SINGLE. DAY. Most days I wake up with my head pounding and it never stops even when I lay down at night to go to bed. Saturday my head hurt so badly that I had to eat dinner with my sunglasses on because the light hurt my eyes too much and my family was opposed to eating in the dark. I didn't eat much since I had no real appetite with the pain. My joints hurt like I'm an eighty year old - especially my knees and hips which makes walking super painful regardless but worst going down stairs. I had a drug interaction with my statin which exasperated this most delightful side effect at the beginning and I'm still waiting for the pain to go completely away now that I'm not taking the statin anymore. I'm naseated and feel like I'm going to throw up at the drop of a hat. There are days it is worse than when I was pregnant. And, on top of feeling like all this, I broke out in acne and look like a teeny bopper who doesn't know how to take care of her skin again. Yippee. At least I won't get the cancer later so there must be something okay about this drug, right?

I met with my doctor this morning and there are some tiny bits of good news. My proteinuria is a little better than last month and my kidney function has rebounded solidly back into the normal range now that I'm not taking most of the original meds that impacted it while trying to reverse the protein loss. However, I was unable to continue to avoid the dreaded addition of steroids and now I'm waiting to balloon up and look like a fat cow on top of everything that I'm already dealing with. That should be great for my psychological health. Hopefully this won't happen but I'm not holding my breath. Hands down the best news of the morning is that I can add fish back into my diet without losing the benefits of being a vegetarian. Sushi anyone?

My emotions have been all over the map the past week. It started with my inability to walk because of my hip pain last weekend; then I had the worst week of yoga starting with last Monday's class where I couldn't do most of the poses because of my pain and then not even feeling up to trying either of the other times I had it scheduled; and finished up when I tried to do a 5K on Saturday and couldn't finish it. At one point I was bringing up the rear and could barely talk while I tried to keep up with my friend who was pushing her sister who is fighting breast cancer. I know it is progress since until now I haven't even felt like attempting a race but then when I couldn't finish - mostly because I was an idiot who took my diuretic before I left home and had to break off early to find a restroom - it was even more of an emotional blow to my already delicate psyche. I spent the rest of the day with a throbbing headache on the couch feeling sorry for myself. Yes, folks, even I succumb to the feeling sorry for myself trap once in a while.Yesterday was much better and I got a few hours in the morning free of headache pain so I didn't spiral out of control and am back to wanting to kick ass and take names. Maybe a nap first though? It helps that I was back on my yoga game this morning thank gawd.

Even with all the emotional breakdowns I have cause to celebrate. Although the 5K was a dismal failure that proved to myself that I can no longer call myself a runner *sniff*, it was the first race I participated in since the one last October that could have, and probably should have, killed me. The fact that I'm still fighting to be healthy and haven't given up in the face of all the past year has brought me proves I can make it through wherever this road leads. Even when it blows... I just have to stop every so often for a pity party apparently.

Sunday, September 29, 2013

Vegetarianism and immunosuppression - oh my!

Lots has happened and I'm kind of torn about how to share it with everyone. Thus the sporadic nature of my blogging lately. If you're reading solely to follow my journey with kidney disease you might be disappointed. I had an epiphany last week. I've always been a believer in positive thinking and that whatever you focus on will happen. It occurred to me that in my focusing on having kidney disease that I was defining myself in the negative light of being sick. That is over. From now on I'll be focusing on things that I have to be grateful for and things that make me lucky.

With that being said, there are lots of changes lately in my health so here's a list of bullet point facts that are true:
  1. My proteinuria got worse over the last three months.
  2. I got a second opinion and I didn't like much about what the other doctor said.
  3. I became a vegetarian a little over a month ago - doctor's orders.
  4. I started immuno-suppresant drugs a couple of weeks ago.
Its definitely been a month of adjusting but I'm still positive and I still feel great on a day to day basis which makes me super fortunate. Plus, I didn't die which completely defines how I view my life these days. You only live once and when you almost die you start to live much more for the moment and appreciate what you have rather than what you don't or what you wish for.

Vegetarianism as been both harder and easier than I thought it would be. Easier because I don't miss meat at all. I miss fish a tiny bit but I haven't felt deprived or unhappy at all. Harder because it takes a whole lot more planning and strategy just to make regular meals happen. When you've always cooked, your habits of what you shop for and what you stock in the cupboard are pretty set and without much planning you know how to throw a meal together. When all your go-to habits include meat - and you have kids and a husband who don't want to be vegetarian - it isn't as easy. I found after the first week of cooking what I thought sounded good from recipes online and the kids wouldn't eat any of it that if I include at least Big Sister in the process of recipe searching that there is a higher probability that she will eat it. And if Big Sister will eat it, Little Sister will likely follow. Another thing that is harder than I thought it would be is that if you are both vegetarian AND have to watch your sodium there are lots of recipes you can't make. The best part of being vegetarian is how much better I feel. I'm still eating eggs and dairy and most of my protein has been from my favorite green veggies like broccoli and spinach, eggs, and my new favorite portabello mushrooms.

After six months of trying the least-invasive treatment options for my disease, it was clear it wasn't being effective. It worked for a bit but then it didn't. I'm super lucky in so many ways. First, that I am smart and live in the computer driven information super age. I Googled the SHIT out of treatment options knowing that a change was imminent after my second opinion. Second, that my doctor is willing to let me be a partner in my treatment decisions. The "recommended" treatment for what I have is a chemotherapy drug and a high dosage of steroids. I'm unsure why this is the recommended treatment when it comes with only a fifty percent success rate and gives you a fifty percent chance of getting bladder cancer or leukemia. Perhaps those odds are acceptable for "normal" kidney patients who are in their golden years but when I am only forty one, 'later' still has me in the prime of my life with my kids not even fully grown. No thanks. Together, we decided on a different plan that starts with an immunosuppressant drug with no cancer side-effects and no steroids. Plan B is in the wings as well and is a drug that works super well but is expensive so the insurance companies won't approve it until you've tried something else. I'm not even going to start down that road since it's an entirely different commentary on our healthcare system and will only piss me off if I get started.

So, there you have it. I'm also seeing positive changes in my body now that I'm doing yoga three to four times a week on a regular basis. The scale doesn't show much difference by I've said it before and I'll say it again: the proof is in the pants and mine are fitting better every week. I've got a very strong core - something I can honestly say I have NEVER had in my life before yoga. I'm loving the fall weather with cooler temperatures and am looking forward to starting my "Couch to 5K" training program so I can be a runner again. I miss feeling in cardiovascular shape and it is definitely time to get back to it. It's been a full year since I've done any running and I know it will be like starting over rather than being a runner who took a few weeks off. I've lowered my expectations on how easy it is going to be. The best part is that I already know I've started from an even worse place than here with my fitness before and did a half marathon within six months. I've totally got this!

I'm also busy plotting my next novel. November approaches at breakneck speed after all.

In short, I didn't die a year ago and now I'm busy living life to the fullest in the only way I know how - overachiever fashion where I do everything. Go big or go home, baby!

Friday, August 16, 2013

The proof is in the blood work

I did a little experiment this past month. There is something so appealing to testing a hypothesis that I find impossible to resist. After the initial scare of "I almost died" and it's close cousin "I have kidney disease" were over and I'd settled into treatment, there was apparently not enough excitement in my life.

Here's some background... My blood work has consistently been getting better and better and with standing orders for testing every two weeks, I could keep a very close eye on things. Last month when I saw my specialist she said I was doing well enough that I didn't need such careful monitoring and changed my lab orders to once a month instead of every two weeks. Plus, I didn't need to see her every month but every other month. Remember those essential oils I mentioned that I'd been taking? Well, they are really expensive - not all of them but the ones I needed, lucky me. And the more I researched the oils and supplements the more I wondered if just taking the company's recommended daily supplements - which included basically the same oils I was taking individually everyday - would work just as well. Not only was there potential cost benefits if they did, but the convenience of pre-packaged supplements was far more appealing than the mess associated with putting drops of oil in a tiny little gelcap twice a day.

So, last month instead of reordering the Clove oil I was out of, I ordered the supplements instead and decided to test the theory that they were just as beneficial as what I'd been doing.

A month later, my skin is clearer, my colon is cleaner and my energy levels are back up into the normal range. I'm super happy with the supplements and will continue taking them for sure because of the benefits to my overall health. But what about my specific health concern?

Yesterday was my monthly lab work. And this morning I saw my test results. Disappointingly, my steady decline in the proteinuria I've been enjoying was not there. Instead it was up - almost double - from the level it was last month.

I'm not sure how I feel about this...

On the one hand, I am now determined to start taking the individual oils again like before and see if my hypothesis is correct next month when I expect to see a better result than this month. The excitement of a provable theory exhilarates me. On the other hand, I'm kind of irritated that my idea to save money and get the same benefits from the essential oils through the supplements rather than individual oils is out the window. Now I either have to give up taking the daily supplements or be okay with spending even more money than I was before to do both. Talk about a backfire!

My brain is also trying to compute what else was different this month that could have contributed to the reverse in my trend. I've been eating healthier and basking daily in the joy of leafy green veggies that I can eat whenever I want again. I've ramped up my exercise with 4 days of regular yoga practice and just added lap swimming thanks to a brush-up-on-your-strokes-and-learn-how-to-kick-turn lesson from my daughter's swim teacher.

Because I started out taking a half dose of the supplements which is recommended at first, my thirty-day supply has lasted me longer. So I'm going to continue taking the supplements and start back on the daily protocol of individual oils as before for the next 30 days. And then we'll see what the lab work reveals next month.

Any bets on the results? And is anyone else as turned on by ACTUAL MEASURABLE DATA as I am?

Thursday, August 1, 2013

If you want something done, do it yourself

I'm not sure if my overachiever tendencies stem from my OCD or if it's the other way around (what came first, the chicken or the egg?) Regardless of how I came to be the way I am, I've always agreed with the statement that if you want something done right you should do it yourself.

I work for a healthcare organization and this year they have launched multiple programs to get us, the employees, to live healthier. They gave us all pedometers as part of our yearly employee gift. They have multiple contests and incentives to track your fitness activities. And they haven't let up even though the year is more than half over which tells me they are really serious about getting us all healthier. We have a fitness center on site that hundreds of us pay monthly fees to use. I've heard other facilities within the organization have gotten permission to use part of those funds to pay for regular yoga instruction as a benefit to the fitness center users. And we all know how addicted I've become to yoga since I had to take a hiatus from running. So I started pushing for that to happen here. Months later I'm still getting the run around about how there's no budget for that and blah blah blah.

Meanwhile, I do yoga in my cubicle every time my back hurts and sometimes that spills over into the aisle. A couple of weeks ago two of my co workers started talking about how they want to do yoga at work and how come we can't have classes, etc. while I did a warrior series in the aisle and they marveled at how I could just do yoga wherever. The conversation came full circle to end with "Terra, why don't you teach us?"

Hmmm.  Why don't I?

Other than that very obvious reason that I'm not a certified yoga instructor aside, why couldn't I? I practice yoga twice a week minimum and on occasion have even led my group practice when there are newer yogis in attendance.

So, in very overachiever fashion, I booked an auditorium that would hold us all and taught my first class yesterday. Everyone loved it so much that they begged and pleaded for it to be a weekly happening. My boss said okay and now I'm looking online at ways to get certified to teach yoga.

What an amazing journey life is when you open yourself up to wherever your whims take you without limiting your possibilities. If I hadn't taken matters into my own hands we'd still be waiting around for other people to make regular yoga classes happen for us. Instead I've gotten a whole new group of people excited about yoga who talked all day about how sore they are and who can't wait for next week. I love life and am still so glad I didn't die!

Tuesday, July 23, 2013

Operation: Back to Fit

The last couple of weeks have been sort of an emotional roller coaster. I'm feeling back to normal day to day other than being tired and ready for bed by early evening yet now I am feeling the effects of my out of shape body and hating where I am currently with my fitness.

This morning I stepped on my Wii Fit. Although I haven't been on it in almost two years, that little bastard hadn't forgotten how much I used to weigh and took great pleasure in proclaiming that I now weigh thirty three more pounds than I did the last time I checked in. Thirty three. That's a tough number to swallow for anyone I'm guessing. Because of my water retention side effect and it's accompanying "diuretic dance" as I like to call it, I've been tracking my weight daily and have stabilized here for the last couple of weeks. Now that I can eat all the veggies and salad I want, it's time to get back to my normal healthy eating which I know is one of the biggest pieces of my fitness that will be easy to see results with.

And then there is my exercise. I've been struggling to run again - or rather to find the will to run again. So much so that I kind of decided that maybe I wasn't really going to be a runner anymore or at least for a little while until I can drop some of this extra weight. Running while you're packing around an extra forty or fifty pounds is pretty painful and discouraging. But that left the question of what to do instead. I already know that whatever I'm doing I have to enjoy or else I won't stick with it. Running and yoga are the only things I've ever tried that I loved and stuck with long term. After lots of brainstorming, I decided on swimming and cycling. I hear tons of people all around me touting the low-impact yet extreme cardio benefits of cycling but have never tried it and I have always loved to swim but never went to the gym to actually swim laps. It was worth a try...

I thought the Universe and the stars were aligning to point me in a solid direction toward cycling. I've got a friend who is selling a road bike who is the same height as me - apparently that determines the size of the bike that's right for you. And, I've got another friend who is recommitting to fitness after a year of injury setbacks who is a cyclist. Knowing everything is better with a buddy, I thought it was a perfect fit to team up with her.

Last week was a fabulous week of torture and July 17th marked the inception of my current mindset which I like to think of as "Operation: Back to Fit". Workout Buddy and I sat down Tuesday night and discussed our schedule and options and I mapped out a plan for the week:

     Monday: Yoga
     Tuesday: spin class/walking
     Wednesday: walking
     Thursday: Yoga
     Friday: lap swimming/spin class
     Saturday: cycling
     Sunday: rest

It all looks great on paper until I plug in the reality of when all of these activities were going to occur. Mornings. Now granted I've been getting up early for yoga at six o'clock in the morning every Monday since December and willingly agreed to add another class on Thursday morning at six thirty when summer started, but I always have several days of "sleeping late" in between to recover. The plan now is to get up early to do all of my exercise during the week. I know how amazing I feel when I start my day with physical activity but it still isn't easy for me to drag myself out of my comfy bed when it is still dark outside. Now I'm deciding to do that every day of the week? Good lord I hope I can do it and survive the rest of my life without turning into yelling sleep-deprived mommy with my girls after work. One thing I've had to admit to myself is that my life is far different than it was even a year ago and fitting in my daily workouts has becoming more and more difficult. Getting up early and claiming the time before everyone else wakes up and starts demanding my time is the only way. Sigh.

Wednesday morning hadn't yet dawned when Workout Buddy and I set out for a very brisk morning walk. Walking seemed like the easiest part of my plan before that morning and then the reality of exactly how out of shape I am became disturbingly clear. Three miles in an hour and I could barely carry on a conversation the entire way. Then there was how sore my hips and back were the rest of the day and most of the next. It was then that I really accepted that I was starting over at square one. No wonder I had been so frustrated with my efforts at running the past couple of months. It's like starting in the middle instead of at the beginning and then wondering why you can't finish. DUH. I guess another example of how far my head has been in the sand. But, it also motivated me to work hard so I can see the results I know will come with starting at the beginning and building my cardio endurance.

Alas, Woman cannot run on yoga alone...

I was so exhausted by Friday that when Hubby called to tell me plans were changing and he was not staying at the gym with the kids until I could get there after work to swim my laps, I was more than happy to just go home and rest up. Don't judge. It's my first week... (I'll have to thank Baby Sister for her full-fledged whiny-butt show with Daddy somehow.)

Saturday morning was my first cycling adventure. I have a mountain bike that I've had for twenty years and probably ridden a total of under three hundred miles so it isn't like I don't know how to ride a bike but I'm also far from experienced. I have no gear - not even a bike helmet. And when Hubby got the bike down out of the rafters of the garage we found the shifter was broken and I had only one gear. Luckily Workout Buddy had an extra mountain bike and an extra helmet so the plan wasn't completely derailed. I strapped on my gloves for lifting weights, dressed in my yoga gear and strapped on a pair of running shoes wondering if there were special shoes for cycling and what else I was going to need if I decided I was going to like cycling and headed out.

A quarter of a mile into the ride I was fighting the urge to throw up after struggling up a horrific hill. I knew about this hill going out, had indeed psyched myself up for it knowing it was the hardest part of the planned course. But oh my god it was worse than I ever dreamed it could be. Thinking, naively, that since that was the worst part and the rest of the course was "flat", I pictured the next six and a half miles to be easy to moderate exertion. I was quickly disappointed in the rolling hills with very little down slopping which translated meant I had to actually pedal the whole way. I was unable to keep up with my friend's road bike and her ten times as many gears OR catch my breath. Hard core cardio is an understatement when it comes to cycling. Overall the ride was enjoyable but only because the last half was downhill or truly flat as advertised. The chauffeured ride home after we arrived at our pickup for Bountiful Baskets helped immensely I'm sure. Workout Buddy's husband took me and all the fruits and veggies and jam-making ingredients home while she headed out for the rest of her twenty mile planned ride.

That ride was both more fun and harder than I had ever anticipated and served to bring my thinking full circle when it comes to my fitness plans. I realized that I truly love running and have all the gear and then some to be a runner. What I don't love is being where I am now feeling like I'm back where I first started. However, I'm not really and truly back at the beginning when I know I'm still able to run for more than thirty seconds at a time because when I did start that's all I could do. Plus, if had lost all my cardio base I wouldn't have had so much fun after the hill or been able to pedal for an hour without stopping. If I switch to cycling, I would be starting at the very beginning on a road I've never traveled before. With running, it is a road I've traveled successfully to three Ragnar Relays and a half marathon with countless other 5Ks and 10Ks along the way. I just need to put on my big girl panties and get going already!

This week will be even easier knowing I survived last week and have a solid plan of attack. I'll add in swimming to see if I like it and go from there. Every journey has a beginning but that beginning isn't a neon sign flashing in the middle of the road, it lives in our commitment to start living the way we say we want to live and celebrating the triumphs and setbacks along the way. It is a journey so here's to the beginning of this one. Again.

Monday, July 8, 2013

My own little challenge

I've been looking back on my blog entries and feeling like a broken record. Could I talk about anything besides my health the last few months? Unfortunately I haven't been writing, or running, or over achieving in any way besides staying on top of my laundry and dishes while dealing with my new crazy reality - even at work. So I decided to challenge myself to find things to blog about that had nothing to do with my health. Instead of coming up with lots of fun and entertaining things to talk about, I didn't blog for weeks. *Sigh*

So, here's some random thoughts and things I'm grappling with this week.

1. My lack of motivation to run again. I need a fairy godmother of running to appear and smack me upside the head with her magic wand so I can get my running mojo back. It is apparently really hard to get back into a daily workout regiment mindset after almost a year has gone by. I ran a couple of weeks ago and my calves were super crampy and my lungs have lost a few steps which had me kind of dejected. It's one thing to assume you are basically starting from ground zero and quite another to actually see proof that you've lost basically everything you once had and fought so hard to develop. I've committed to a relay race in late August, a 5K in September and a half marathon in October with my running buddy but have yet to start whole-heartedly training. What the hell is my problem? I think part of it is emotional since my bought and paid for half marathon that was supposed to be my triumphant return to running after my pulmonary embolism came and went without me there. I cried that morning which is kind of unlike me and maybe I haven't completely gotten over the loss. There's nothing I hate more than admitting I can't do something and it really got to me. Time to grab the boot straps and get my shit in gear before it's too late.

2. Yoga. On the flip side, my yoga practice has morphed into amazing levels and makes me so happy. I was on call last night, didn't get to bed until almost one in the morning and got paged at two, three and four (almost on the hour) but still got up in time to make my six AM class. It's been seven months of regular practice and I can feel measurable results both in how my body feels and the things I can do. I have a very solid core that I am aware of all day long for the first time in my life. And I can do a back bend, a hand stand (against the wall, but still) and all sorts of poses I never thought possible. The best part is that I now am confident enough to do my own practice instead of having to have someone lead and tell me what to do. It was amazing to wake up in the morning of our book club overnight retreat and bust out a half hour session of yoga by the pool with two of my fellow yogini.

3. Book club pressure. It's my turn to pick the book for my book club. The last six months flew past and where I usually voraciously read a grip of books in an attempt to find the perfect one, I find myself under the gun with not enough time to pick the way I want. I read forty five books last year and have already read almost half that many this year but when I put together my short list yesterday it was a struggle to find even nine that are remotely worthy of consideration. Of those nine, I've narrowed it down to only three that I feel would yield a great discussion. One I eliminated as too long to read in a month because even I balk at a mammoth of eight hundred pages when there's a deadline to finish. Two were angst ridden young adult novels with little to discuss when I tried to make a list of topics for the group. A couple were science fiction and had great premise but again, not a lot to discuss. One was beautifully written but ultimately just a short story about a very depressing subject with nothing much to discuss beyond the big reveal at the end. What I'm left with is a beach-read romance with a twist that I fear is ultimately filled with cliche that people won't find enjoyable enough to discuss, a post-apocalypse tale that overall is grim but gives a ton of discussion, and a Pulitzer prize winner that I fear is far too controversial for my group as a whole. This last one I have wanted to pick for several years and still finds its way onto my short list. Going into this year I just KNEW it was going to be the year. And then we've read several very controversial books that pushed the envelope of the group already and do I really want to pile on yet another book that people will either hate dragging themselves through or will simply choose not to read because they really want something light and happy? Oh the pressure of picking the book for discussion! No one is arguing that I might put a tad too much thought and analysis into picking but that is kind of the norm for my amazing book club.

Wow, it can be done! Here's to much more to talk about in the coming months other than my health.

Thursday, June 20, 2013

Light at the end of the tunnel

It's been a month since I started treatment for my new reality. I've got a frequent flyer card at the hospital. Having standing orders for lab work every two weeks is all it took. I've figured out my daily medication dance - some I take in the morning, some I take on an empty stomach, some I have to take with food, some only at night. It's kind of crazy when I step back and look at it but I've gotten it down to almost second nature.

Last week I met with my kidney specialist to see how I'm responding to her treatment plan and figure out next steps. It was amazing to see what a difference my labs show after such a short amount of time. Kidneys still functioning perfectly, my proteinuria is down to 3 from 18 a month ago. My risk factor for long term decline is down to only a moderate chance. She also said that I'm no longer in danger of developing new blood clots and if I keep this up I should be all better in a few months and can taper off my meds. Best part: no more fluid restrictions and I can *try* running again and see how it goes. 

There was a little bump at the end of the week when I was so light headed and feeling sick at work that I went to the nurse and had my blood pressure checked. It was SUPER low so I went home and called the doctor. Apparently it was hot enough outside added to my higher dose of diuretic I've been taking that I was dehydrated. Drank some Gatorade and lowered my diuretic dose and I'm all better again.  

This week I met with my regular primary care doctor since it has been three months since we made our deal about going back on Coumadin - three months to the day as it turns out although I didn't do that on purpose. It just happened to be the day I ran out of my medication and I didn't want to refill that prescription again. He agrees that I've made enough progress that I can stop taking it. Hopefully forever this time! I've been celebrating with a huge salad every chance I've had because I can eat whatever greens I want to again. 

It's no secret I'm into natural and alternative medicine and I wonder how much the essential oils I've added to my daily regiment have aided in this quick turn around from diagnosis to now. I look at it that they are all natural and they can't hurt so why not add it to my mainstream medicine regiment. If it helps, I've gained speed toward good health; and if it doesn't it won't hurt anything by trying. After all the research and how much better I feel when I use them, I believe it is helping so I'm sticking with it.

Here's to summer and improved health. Although I could do without the heat outside, I'm certainly not complaining about anything in my life right now.

Monday, June 3, 2013

Five Stages of Grief

I kind of knew about this whole five stages of grief theory because years ago there was a cartoon giraffe that people sent around in email (this was before the days of 'sharing' on Facebook) but I had no idea it was real. However, I've been through them all and can tell you they are very very real... I wish I'd had the foresight to save that little cartoon so I could insert it here but alas I didn't. Here's how the stages have played out for me now that I have the benefit of hindsight.

Denial - this happened many times. I denied there was even anything wrong before I finally went to see the doctor with both lungs halfway blocked with blood clots. Happened again when my legs started swelling up and I didn't mention it until it was impeding my ability to do yoga. In the overall scheme of things, I think I excel at this one the very most! How about when I was so sick I ended up in the ER for five hours but was still planning on going to spend twelve hours at a dance competition. "I'M FINE!"

Anger - This one was kind of overshadowed but I know I was mad for several weeks in my initial treatment when I had to give up all my favorite foods because of my blood thinners. I think I could have gotten my dose regulated far sooner had I not insisted on still eating broccoli at least a couple of times a week. I was also briefly but epically here right after my final diagnosis when I declared to the Universe that this shit wasn't going to stop me...

Bargaining - I bargained with my doctor when he wanted to put me back on Coumadin when we realized I hadn't stayed on it long enough initially for my clots to be dissolved. He was nice enough to humor me with my bargaining antics. Probably because I'm super duper good at it!

Depression - this one was the most marked for me since I've never suffered with depression. When it became clear there were more things going on with me than a silly little blood clot that would eventually go away I got really depressed. It didn't help that I had ballooned up an extra thirty pounds of water weight in three weeks so on top of dealing with a long-term illness I was super bloated with nothing that fit. Literally. Anyone would be depressed at that point!

Acceptance - I've gained this level in the last couple of weeks. Treatment options are working and I'm getting better and better every day. Yes, I have kidney disease that will never go away, but I'm okay and I can still do pretty much everything I want to. I've had to give up running for a time, but I still have yoga and I can swim and play tennis which I'm going to incorporate more of this summer to stay active. The best part is that I didn't die and chances are I'll never be worse than I was at my most depressing time if my treatment plan continues to work well.

Now that you've seen how things played out with me... I used my overachiever skills and my advanced youtube searching capabilities and found the giraffe video! It is just as funny years later although for more personal and ironic reasons. Here it is for your viewing enjoyment:

So, life, what's the next chapter for me?

Sunday, May 19, 2013

Did I say rock bottom? Just kidding!!

Remember when I said I'd hit rock bottom and then in jest said something about how I hoped it was the bottom because that would be a sick joke if it wasn't? Well, I've learned the truth of 'never say never' and to never assume you've seen the worst it could be... because man did it get worse last week. Here's what happened - in chronological order because I'm OCD like that of course.

First a confession... I already knew what I had on my last blog post - probably why I was already at the anger stage. My insurance company has an online medical record and if you are smart like me you know that those tests your doctor orders are usually online long before you meet with that doctor to see what they showed. So, Tuesday I saw the pathology report with my diagnosis: Membranous Nephropathy. And of course I googled the shit out of it.

Bottom line: there is no cure. The membranes in my kidneys are enlarged and therefor don't work as well so I lose all my protein in my urine. But two thirds of the people diagnosed end up in remission so my chances are good. I met with my specialist on Thursday still a little sore and weak from the biopsy but having spent the better part of the week on my couch helped. She started me on several new meds and ordered additional tests including standing orders for them to be repeated every two weeks to monitor how well the new meds are working. So much for seeing the doctor and the lab less often, eh? Both meds are designed to treat the symptom of losing protein so I don't also end up with my kidney function declining. I left the doctor with the knowledge that I really had the answers I've been searching for (ROOT CAUSE!) and a plan of attack. I felt hopeful and happy.

And then Friday afternoon I started feeling crappy. At first I chalked it up to having taken a higher dose of my diuretic which my doc said I could try to see if the water retention would go down faster (I'm not a patient woman, remember!). I also read on the information sheet of one of the new meds that I had started that it was common to feel run down and yucky when first taking the med. (Am I the only person who actually reads that whole paper they send you home with from the pharmacy?) I logged off work for a nap to try and feel better about two o'clock that afternoon. My kidneys ached and I couldn't get comfortable and generally felt awful. Got very little sleep on Friday night and woke up Saturday morning no better.

Saturday morning an hour before I was supposed to leave for Big Sister's dance competition where I was looking at nine hours on the high school bleachers, I couldn't take a breath without excruciating pain in the abdomen which radiated up my back, through my chest and out my shoulder. The deeper the breath the worse the pain. I was faced with the hardest thing ever as an overachiever - the knowledge that no matter how much I wanted to power through whatever I had in my way I wasn't going to be able to do it all. I still hate to think about it! Here's something else you might not know about me: I hate asking for help. Of course it goes along with my overachiever tendencies because if I have to ask for help then I've made an irrefutable statement that I cannot do everything. So not okay with me and after all of these years of doing it all I am very, very set in my ways.

Luckily I have amazing friends who are also close neighbors. I called Mommy of Big Sister's BFF who is also one of my BFF's and a fellow dance mom since her older daughter is also on our competition team. She is like a force to be reckoned with in a crisis. As in I think that FEMA would be a great place for her in the event of a major disaster. Within minutes she had called Mommy of Baby Sister's BFF next door who came and took her away - in her pajamas - to spend the day with them. And she rushed over to grab Big Sister and all her gear for the competition whisking her away to do hair and makeup and be her surrogate mamma for the entire 9 house so Hubby could take me to the Emergency Room at our nearest hospital.

Five hours I spent in the ER. Five. Hours.

Basically I was one of the few lucky people who's kidney bleeds after the biopsy. The blood pooled under my diaphragm and created irritation both on the kidney and the diaphragm so every breath resulted in intense pain. Of course they ran a total blood work up to make sure there wasn't anything else going on plus a urinalysis which confirmed there was blood in my urine and therefor my kidney. Then my blood pressure was super duper low and wouldn't stablize so I had to stay a while longer - turns out I was a bit dehydrated. Gee, isn't that what one would expect when I'm on a powerful diuretic and have liquid restrictions? Sheesh. I got some great narcotics to knock me out and curb the pain while my body reabsorbed the blood my kidney leaked out because there was nothing else they could do. Most of Mother's Day weekend was a narcotic blur full of pain and suffering. Plus the emotional pain of having missed watching my daughter dance for the first time ever. Having to let go and accept that it doesn't make me a bad parent was difficult but her surrogate mom for the day brought me video and score sheets so in the end I didn't have to feel like I missed a thing.

This week has been much better. *knock on wood* My pain was gone by Tuesday and the novelty of taking a deep breath has returned. Each day on my treatment has me feeling better. I'm also using essential oils to treat the nausea side-effect of whichever med it is that causes that and to generally improve my mood. Hubby calls them my magic oils which might be accurate since they make me happy. I say "what does it hurt", right? I even spent twelve hours at Big Sister's dance competition yesterday like I hadn't been in the hospital a week ago. Go me!

I guess the visit to the hospital showed that overall I've been super lucky in this whole journey. I've never been hospitalized even when both my lungs were half blocked with blood clots. I can still work and play and care for my children even if my house is less than pristine most days because I don't have the energy for housecleaning on top of it all. And if I had to chose my kidney disease, I got the one I would have picked. The treatment is relatively benign, it is a slowly progressing disease where it would be decades before I need dialysis/transplant and my chances are higher of going into remission than progressively getting worse.

So yeah, I have kidney disease. But I'll be fine because I can't change it and I'm not going to sit around and wallow about why it happened or play the victim about why it happened to me. In truth, this specific thing happens to two in every ten thousand people which makes me just one of thousands going through the same thing right now. And I'm a master overachiever so I've got this in the bag. Even if it means going to bed a little earlier so I have the energy to kick ass as needed the next day...

Thursday, May 9, 2013

Biopsy week and a glance down memory lane

Two years ago I was preparing for my first ever Ragnar race that was a month away. I ran two of those bad boys that year and logged well over five hundred miles on my running shoes. I was the healthiest I've ever been in my entire life after deciding in 2008 that I was done being unhealthy and unhappy and transformed myself into a runner. I think that's why this whole ordeal has been so hard on me. I worked my ass off to be healthy and live a long life with my kids and my husband to end up two years later with kidney disease? That is bullshit. Fucking bullshit.

Monday I had my kidney biopsy. Afterwards, they handed me my instructions to go home with which I was awake enough to read through. To my surprise item number four read: "You may return to work in one week." What the hell? No one told me this shit was going to take me away from work for an entire week! Don't you think that is something you kind of need to tell people ahead of time so THEY CAN PREPARE? I was so pissed and I'm sure I scared the timid little nurse with my thunderous rage as she scurried out the door to get someone to talk to me. The compromise is working at home all week from my couch but only because I have one seriously amazing boss. Three days out from the procedure, I totally know why I needed this week off. I'm a slow-moving hot mess who is out of breath and has zero stamina. Is it time for my nap yet?

Today is what I have dubbed "Answer Day". I have an appointment with my specialist this afternoon to go over whatever it is that the biopsy showed and where we go from here. My one and only question for her will be: how do I get back to where I was two years ago where I can run every day and have energy to keep up with my kids? Because that's all I'm really interested in. This shit - whether it is curable or not - is not going to take the joy from my life. I may not get to choose whether I have kidney disease but I get to choose how I live with it! Wish me luck and workable news...

Wednesday, May 1, 2013

Clawing up from rock bottom

It can be said I've been through the wringer the last few months. No argument here. But nothing about the past five months had prepared me for what I faced the past few weeks. I am certain I hit rock bottom last week. Or at least I hope it was the very rock bottom. It's possible the Universe has yet another joke to pull, but I hope not!

I put on another ten pounds of water weight the week between my last visit with my doctor and meeting with my nephrologist (kidney specialist) last Monday. TEN pounds. In one week! Literally nothing but my yoga pants fit me and my face was so swollen it was impeding my vision. I was a water balloon stretched to the limits and could barely get through the minimal motions of yoga the morning of my appointment. My yoga instructor who is also a good friend must have been inspired because that morning she said "if you can sit and breath, you are doing yoga" which my poor psyche took great comfort in. I couldn't sleep because just having my legs touch each other was painful, all I wanted to do was sit on the couch - and eat of course since I'm an emotional eater - and I can say I now know what depression really feels like.

I walked into the nephrologists office hoping for a miracle and that somehow I would have relief that day. I went early to do paperwork, watched all the elderly patients walking in and out and wondered how I fit into this scene at all. When it was my turn I stepped on the scale, saw the HUGE new number, and then sat crying in the exam room waiting to meet my new doctor knowing it was probably not going to get fixed in a day with some magical new medication she could prescribe. The office was plastered with posters about advanced and chronic kidney diseases and all this treatment info. I'm certain it was meant to be helpful and informative but instead it was overwhelming.

When the doctor came in she asked a lot of questions and looked at all the labs and imaging I've had done but didn't know what was causing this thing with my kidneys. It was ironic how many of the questions about when symptoms had started could only be answered by framing them in terms of my fitness. For example, I only noticed the swelling in my legs when I could no longer sit in child's pose in yoga about a month ago. And my shortness of breath went away for a bit because I could run in January but soon came back and I haven't been able to run since February. At one point she looked at me and said "so, you are healthy". Um, yeah! Which is why this is so hard to deal with. She took a ton of blood for more testing and ordered a kidney biopsy so we will have some answers and know where to go for treatment. Best of all, she prescribed a new medication that I could start taking immediately to help with the water retention. And, she believes that whatever has caused my nephrotic syndrome is the cause of my blood clots in my lungs which means I've been dealing with this since sometime last fall and possibly even longer.

The relief of having at least one question answered was so great. Of course it doesn't address the question of what's going on with my kidneys but baby steps are okay for me here. The nephrotic syndrome, which causes the water retention, the blood clot and even the thyroid issues are all still symptoms of something else happening which is yet to be determined. Kind of like going deeper into the rabbit hole. The big bad things I used to fear - diabetes and heart disease - have been ruled out completely which makes me happy in some tiny way.

Speaking of relief... that new medication? It turns out she COULD give me a magical cure in the form of a pill that day! After one dose, I had dropped FIVE pounds the next morning. I have to monitor my blood pressure and my weight until I see her again because it might be too high or too low of a dose. So I know that I'm down almost twenty pounds of water weight just in the last week. I feel so much better it makes it seem like I've been cured. Of course there's still the kidney biopsy looming next week - a four hour procedure under general anesthesia - but that will give us definitive answers so I'm looking at it as a positive thing. And trying not to freak out about the procedure itself of course.

I have even more restrictions on what I can eat - and drink now, too! No salty foods, and no adding salt at the table to anything. And, I can only drink a total of two quarts of fluids each day. That includes all fluids. Coffee, breakfast shake, water, everything! Both of these have to do with the water retention so I'm more than happy to oblige although I am constantly thirsty now and would KILL to be able to hydrate normally. There's some more irony for me.... I'm a runner who can't run OR hydrate anymore. I'll be a hot mess and will probably have to start all over when I can run again. But, at least I didn't die, right?

At one point in the deepest darkest week of hell I got drunk on a Tuesday night at a neighbor's house. Not my finest hour but I was so beyond depressed that I didn't know how else to cope besides getting to where I didn't care for an hour or two. Of course I don't have that luxury anymore because I'd have to drink zero all day just to be able to drink enough to get a buzz but it was sure fun to escape while it lasted. At one point I woke up and had one of those moments that you read about - for a moment I was happy and everything was okay and then it hit me like a ton of bricks that I have kidney disease and my world shifted. I always thought it was a metaphor but that's exactly how it feels.

Luckily that deepest darkest week of hell is behind me and thanks to my better living through pharmaceuticals I feel like I'm slowly getting back to normal... again. Here's hoping that the biopsy next week does yield answers so a treatment plan can begin and get me really back to normal soon. I miss running so much that I dream about it occasionally. And I haven't given up hopes of being able to finish the half marathon I'm registered for in June, although I know it will be a lot of walking in between some running. Hubby and I looked across the kitchen at each other last night as we were both getting our maintenance medications out of our respective pill bottles and ruefully laughed. Both of us swore years ago that we were going to do everything possible to stay healthy so we didn't end up being one of "those people" with chronic conditions that required constant medication. Sometimes the Universe has a really sick sense of humor...

Monday, April 15, 2013

When 'Fine' no longer applies

I've reached a place psychologically where I can honestly say I have never been before. When people ask the question 'How are you?' I can no longer respond with 'Fine'. Because I am not fine. No sir, not even close to fine. I've gone so far away from fine that I don't even know how to get back there from here. I hope it is just over the horizon and somehow within my grasp again soon but I'm not sure of that.

Okay, enough of the melodramatics...

My health has taken yet another turn. I thought a pulmonary embolism was the worst thing that could happen - aside from coronary artery disease. But, I was wrong. There I was last week, happily and without complaint following my coumadin regiment and getting my blood tested weekly to monitor my clotting levels, not eating my greens (or at least not cheating too much), not feeling like running yet but expecting it any day now. And I noticed something new. Well, okay, what I mean is that I could no longer ignore something new as insignificant. My legs from the knee down are swollen. And by swollen, think pitting edema (Google it, I dare you). They've been swelling since before Easter now that I think back to the tantrum I had that morning when my cute strappy-sandals from last summer wouldn't go on my swollen feet and I was feeling completely fat and bloated - but I chose to ignore it hoping it would go away. Some things never change I guess.

I mentioned it to the nurse while I was in getting my weekly blood draw and next thing you know I'm having more blood work and urinalysis. Guess what - there IS something else wrong. This time with my kidneys and my thyroid. I feel like I hit the big four-oh and immediately started falling apart. The thyroid thing is apparently unrelated (and hereditary, thanks Mom) but could contribute to why I have had very little energy and don't feel like the coumadin has kicked in as quickly this time around to getting me back on the treadmill/road. The kidney thing definitely is the reason I'm swelling up and retaining so much water. Thank goodness the female part of my psyche that keeps yelling FAT GIRL every time my pants feel tight the last couple of weeks can shut the hell up now. The fifteen pounds of extra weight I've put on the last three weeks is NOT because I'm unable to eat salad and veggies and can't breathe well enough to run yet. So there! *sticks tongue out*

But now I'm back to having more questions than there are answers. Plus more poking and prodding and testing trying to figure out exactly what IS going on with me. Can you say "high deductible met by April"? Say it with me...

Needless to say, I cling desperately to my weekly yoga sessions to reset my psyche. That overworked psyche that is trying her hardest to keep her chin up. The alternative is wallowing in self pity and self-induced panic about what the future holds which I've caught myself doing - very unlike me. I don't feel like myself, I don't look like myself, and some days I have little desire to be myself in this current unhealthy stage of the game. I've grown weary of all this crap and would kill for feeling good with all my energy back. It is a daily struggle to lift myself up and keep myself going. And my family is imploding because the force at the center that keeps it all a smoothly oiled machine is falling apart. But, it is what it is and at least I didn't die. (That's my mantra lately.) While it sucks right now and I'm not fine, I have high hopes that I will be soon.

Camp NaNoWriMo has turned into more shenanigans than writing but I'm still brainstorming and plot outlining whenever the inspiration hits me. Its like going to summer camp and doing the fun stuff like swimming and hanging out by the fire but skipping the hard stuff like cooking and cleaning up. It's enjoyable but it doesn't get everyone fed regularly. My writing can wait while I focus on getting healthy again. And that half marathon I've already paid for? Yeah, who knows if I can even walk 13 miles by June let alone run but I'm still hoping I can participate. We shall see...

If I'm a bit more sporadic on the blog, now you know why. In many ways "I've been better" has become my default where everything used to be "fine". Here's to there being nothing significantly or long-term wrong with me and to a quick recovery back to the land of the healthy! *fingers crossed*

Tuesday, April 2, 2013

A new project for Camp NaNoWriMo

I've got a new project I'm working on. A new novel. And how lovely of the folks who run the NaNoWriMo website to offer the same online tracking and motivational tools and shenanigans of November in April to help me bang out the rough draft quickly this month. They call it Camp NaNoWriMo, I call it brilliant.

Wait, what? You want to know what happened with my first novel? I'm getting ahead of myself? Sorry... let me explain.

Last time I talked about my writing I was anxiously awaiting critique from my writer's group on the first draft of my first novel and stressing that they weren't going to like what I'd written. Well, turns out they all loved it and wanted to jump in and make it better and polished and pretty enough for submission and hopefully publication. And while I want that someday as well, I decided that wasn't the novel to do it with for several reasons.

First, it's my first novel. There's a reason the majority of first novels never get published - they are learning curve victims left to die along the path to becoming a seasoned author. Of course there are famous (and not so famous) exceptions like Harry Potter (and Twilight). And I truly believe that if a new author wants to write and re-write a first novel until it is just as good as a second or a third, it is possible to learn enough on your first idea to make it happen. My good friend has done that and is well on her way to publication. I also know she has most definitely written that book more than once.

Second, I'm lazy and I want the learning return with smaller investment up front. My first book (working title "Natural Balance") is a fantasy. And after all the time it took me to finish the first draft I still don't have a fully fleshed out world built and there are still holes in my magic system. My goal is to someday be published which means I need to learn how to write a first draft and then how to edit that rough draft into something people want to read. So, I've figured out my process of completing a rough draft. But do I really want to learn how to edit using an idea that I'd honestly bitten off more than I could chew? Not so much.

Third, I've learned that I am not going to write fantasy for a living. While I love reading it, it just isn't the genre niche that I'm going to be great at writing in. Another argument for not editing this one in hopes of publication. Say I worked my ass off for the next months or years and did sell this book. Then I'd (hopefully) have fans who'd want to keep reading my work because they loved my fantasy novel. And I'd have no other fantasy to give them? It was my baby, my first real idea for a book that panned out into a plot but the fact that all the subsequent ideas I've had are NOT fantasy is something I need to fully acknowledge. Perhaps someday I can pull my baby out of a drawer an abandoned flash drive and publish it under my well established name and hope some of the same people like this completely different piece of work. But I'll never build a career out of one fantasy novel.

So, I'm going to practice my new-found skills of completing a rough draft by starting and finishing another idea. One that doesn't require me to invent an entirely different world with culture and religion and magic different than ours. This new idea is mainstream fiction set in the world I live in and know everything about. All I have to do is develop some great characters who have tragic and exciting events happen to them that keep the pages turning. That's the novel I'll learn how to edit with. 

And where I go from there, I don't even know yet. There's a chance there's still pieces of this writing thing I still don't even know I need to learn before I'm successful. We shall see! In the meantime, my goal is 30,000 words and a fully fleshed out rough draft/outline by the end of April. Wish me luck!

Tuesday, March 26, 2013

Pulmonary Embolism - 4 months later

Remember that pesky trait I have of being an impatient woman? Yeah, it occasionally bites me in the ass. Like now. I like to think that I've been a model patient through this whole pulmonary embolism ordeal by being very involved in my treatment and following all of my doctor's orders. When I got to stop taking Coumadin at the end of January (totally unprovoked with no whining or bitching on my part I might add), my doc told me to come back after a month for some follow-up blood work. I knew Hubby had to go in for his own blood work mid-March so I just planned to go when he went and calendared it without another thought.

I felt great in February, started training for my half marathon, kicked ass with my weekly yoga class and all around felt great. Then March hit and I started making excuses about mid-week runs, started putting off my long runs and just felt run down. I chalked it up to warming temps in Utah and the return of my seasonal allergies and didn't think much more about it. I was still active, just not doing all that I had intentions of doing. It happens to the best of us.

My calendar - the secret weapon of my overachiever behavior - reminded me it was time for my blood draw two weeks ago so I stopped in on my way to work to open a vein. My insurance company has this cool tool where you can access your own health records online as long as your doctor participates, which mine does. Lucky for me since Monday night I was impatient to know the results - weird, I know - and logged on to see if they were back already. They were but I was devastated. My levels were still elevated and my doctor had made a note that he wanted me back on Coumadin. I immediately began stressing about what all this could mean and Googled what else could cause an elevated result on this particular blood test. Bad idea to Google anything health related I think in hindsight but hey, I need data!

The next day, stressing about possible cancer and liver disease and heart disease thanks to my friend Google, I got a call from the doctor's office to schedule an appointment. I continued to stress about the possibility of being required to take Coumadin for the rest of my life on top of whatever else could be going on until my appointment on Thursday. When I finally got there I was reminded again about how amazing my doctor is and how lucky I am to have found him. I told him all the things I'd been stressing about which he was able to dismiss since I had started this whole ordeal with a full blood workup showing no heart disease or liver disease. We decided that we both wanted to know what exactly was going on in my lungs. I was willing to undergo and pay for another CT scan for real answers rather than assumptions that this elevated level was just because I *only* took Coumadin for three months initially. In true Terra fashion, I then negotiated with him on my treatment options. We agreed that if I still had the exact same clots, he'd be okay with only three months of Coumadin and if it turned out they were new clots then I'd give him six months without bitching about it. It was a fair deal that felt win-win for both of us.

Last Monday morning was very unsettling when I had to stop in the middle of yoga class because I was out of breath and wheezing. Considering I've been doing yoga since a month post-diagnosis I was super scared that my test later that day was going to yield far worse news than I hoped. Well, it turns out I've still got clotting in my lungs but thanks to being able to compare both of my CT scans we know for certain they are the same ones I originally had and that they are significantly smaller. YEAH for no new clots!

So, I've resigned myself to Coumadin for the next three months - without bitching about it - and all the crap that comes with it. Goodbye spinach and all my favorite green veggies.  Hello weekly blood testing and bleeding issues again. But truthfully if being on the stuff makes me feel well enough to run like it did in late January and February, it will be a welcome addition back into my life until these pesky clots are for sure gone. Especially since I've already registered and paid for my half marathon in June.

I have one last hurdle to complete from my follow up - my first mammogram this week. Apparently I'm of the age (yippee!) and since malignancy can cause blood clots my doctor says its a good idea to do it. I was hoping that all the recent controversy in the medical field about doing them in your forties was going to get me out of them for a few more years. But no, I'm not so lucky. Unless you count that I am still kicking and didn't die from this insanity that I still marvel about happening in the first place. Here's to the next three months passing quickly so I can finally put this all behind me for good!

Monday, March 18, 2013

Evolution of Fitness

Last week I realized that my personal fitness has evolved, in part because of my irritating pulmonary embolism which still isn't gone as much as I wanted to will it behind me. (More on all that later.) Like all evolution, little things got me to this current place where yoga has replaced running as my mainstay.

I've loved yoga since I first did it by myself in my basement about 5 years ago. At the time I was super self-conscious about "doing it right" and thus didn't do it very often and never in public. Then a couple of years ago I started occasionally doing yoga classes at the gym when it fit into my schedule. I loved it just as much in a class with others as I did alone in my basement so I stuck with it. Remember my friend who I dragged to yoga last summer when I discovered how much I like hydro training? (You can read about it here) Well, she loves yoga - like LOVES it - and does it faithfully at the gym. It turns out she and I have a neighbor who is a yoga instructor and agreed to teach a class in our neighborhood once a week. A class I have faithfully been attending since December even though it happens at the ungodly hour of SIX AM on Monday mornings. Me, the worlds biggest night owl awake and somewhere by six a.m.on purpose and before coffee. It's insane! Last week, this same friend who I introduced to yoga a mere eight months ago agreed to lead the class because our instructor was going to be out of town. She said something at the beginning of that practice that has really stuck with me. "There's just you, your breath and your mat." I think that's why I love yoga so much. Even though you do it in a group it is such an internal and personal thing where you can push yourself to new limits and every time you do it something different happens.

One of the greatest things I've learned practicing yoga with my close friends is the realization that everyone is different and everyone has their own strengths. I tend to be so judgmental toward myself in comparing where I am with where everyone else is and this class spent with the same people week after week has become a full expression of each of us as individuals. Not in a negative sense but in a very positive one. I'm short and have super flexible hamstrings so I'm really good at down dog and I adore flip dog while there are other poses that I can't even begin to get into like crow and hero that others of us excel at. I get to secretly gloat when we are in down dog and my heels are flat on the mat and everyone else is crying out in pain. Then they get to gloat when they do what they are good at and I'm struggling. This morning we had a conversation about finding "our" poses which also keep evolving the more we practice.

Last week I was on cloud nine after I did my first major inversion. It's called shoulder stand and basically you lie on your back with your chin tucked into your chest with your torso and your feet pointing straight in the air. The first time I couldn't even begin to get my torso off the mat let alone perpendicular. I was dejected but did the modified version instead while vowing that I'd keep trying and "someday" I'd be able to do it. Who knew that someday would only take a couple of months when I finally did it a week ago. It was visible and measurable proof of how much my body and all the muscles have changed. My posture has improved, my walking gait, everything.

Our instructor sometimes asks the question "where do you go when it gets hard?" and I've been thinking a lot about that lately. I think the answer also evolves over time. I used to say I wanted my health and my weight to improve but wasn't willing to do any hard work that took me out of my comfort zone. Now I have to keep reminding myself not to push too hard because I'm still healing from that whole almost dying thing. I used to get dejected and simply give up when I couldn't do something, now I keep trying until I'm finally successful. One thing I've learned is that it really is important to find something you love to do to stay active. It doesn't have to be the same thing as the next person as long as it keep you motivated to keep working hard. I may love yoga even more than running since I never considered waking up early to run but am considering adding another couple of early mornings for yoga. It doesn't mean I'm giving up running, but right now I get more joy and less frustration with my limitations with yoga. Perhaps when all the blood clots in my lungs are completely gone things will change yet again. That's the beauty of evolution - you never know where things will end up. Some days you just hold on for the ride...