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!

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?

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!

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.

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.

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.

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?