Category Archives: Kidney Disease

Finally Answers, Five Years Later

Last November marked five years since my pulmonary embolism which led to the discovery of my kidney disease: Idiopathic Membranous Nephropathy. The idiopathic part, which literally means unknown cause, is the part of my diagnosis that has bothered me the most all these years.


Why the hell did my body–the healthy body of a runner with no other underlying disease or malady–develop this disease?

It’s been a roller coaster of a ride through immuno-suppression therapy and all the terrible side effects, three hellish months of strict veganism, and becoming a vegetarian to gain my health back. Years of vegetarianism to stay in remission, which I thought I could handle and which, turns out, is harder than I thought it would be with school and a family who does all the cooking. All this and still no real answers to why it happened in the first place. Especially after forty years of health with no lead-up or warning.

December 2017 marks the official removal of the ‘Idiopathic’ part of my disease. I FINALLY have answers to the why question and let me tell you how surprising they are…

I’m skipping ahead so let’s go back to the beginning. The beginning that didn’t look remotely related to me personally at the time.

I have several friends who struggled with food that made them sick a few years back. Two of them researched enough that they believed they had a gluten allergy since eliminating gluten eliminated their symptoms. Both went to extreme measures to avoid all things gluten, and still got sick. Both are kick-ass and didn’t take it lying down. Which led me to the LEAP diet and MRT test.

I halfheartedly longed for a way back to my omnivore days where I could eat lean chicken and the occasional filet mignon when the need arose. Seeing my trail-blazing friend figure out exactly what she was allergic to (yeast, not gluten) and able to manage her debilitating pain without medication had me hopeful that this was the way to do it.

March of 2017 I started working with my friend’s dietitian who specializes in kidney disease. I did the MRT blood test in May and (halfway) embarked on the LEAP protocol in June. MRT stands for Mediator Release Test and is a measure of how my immune system cells react to 150 different foods and chemicals. It gave me a list of foods that are causing an inflammatory response in my body split between a “you should stop eating these for now” red and yellow list, and a “you should eat these foods” green list.

What does any of this have to do with kidney disease? MY kidney disease is an autoimmune disorder which is triggered by inflammation in my body. That’s the same reason vegetarianism keeps it at bay since digesting the flesh of animals increases inflammation. Now you’re with me, right? My whole thought process setting out was this: if I can trade the decreased inflammation from not eating meat with not eating whatever I specifically am allergic to then I could theoretically eat meat again.

It was a long shot. I knew it. I didn’t care. Stranger things have happened, (look at me with a kidney disease!) so why not try.

In December, my nephrologist (fancy word for a kidney doctor) confirmed that the changes I’d made to my diet based on my MRT testing had resulted in such stunning changes in my blood work that she was confident in saying that we’d found the cause of my disease.

Did you catch that? Cause = inflammation from immune reactions to various foods. I can’t make this shit up, people! The last five years of hell are because I was eating foods that my body doesn’t deal with well (for forty years). I’ll write up all the details (it will be a VERY long post, I warn you) but this is the gist of my answers.

It is stunning and overwhelming to think of this one case, mine, and wonder how many more people out there suffering with crazy health scares that don’t make any sense might have similar causes. It’s a soapbox topic from the beginning of my blog, this food that isn’t a food and how terrible we eat as a country, but this takes it to a whole new level. Don’t you agree?

Stay tuned if you want nitty gritty details because you know I’ll share them! And my dietitian is doing a case study of me (look, mom, real science and shit!) to publish. Maybe I can somehow help others in similar circumstances by sharing my story. For me, I’m just glad I get to eat meat again!


Baby steps to achieving goals

My health has settled down a bit lately – still in remission from kidney disease, manageable medications with minimal side effects, still working on clearing my lungs of the last of the blood clots that are holding on for dear life. Most days, life is good and I almost forget that I have a chronic illness that will never be cured. But there is this one reminder that, by stark contrast, shows me daily how my fitness has suffered in light of these struggles. I can’t run a mile anymore, let alone thirteen of them. Hell, it’s hard to walk briskly for long periods of time right now. It is frustrating to look back on where I was – running Ragnars and half marathons and averaging twenty miles a week – and compare it with where I am now.

I know everything is relative. I do. I acknowledge every day that I get to live is a day I may not have had at one point and I’m happy. But that’s on a very basic level rooted in survival. I’m talking about the stuff of living.

How did I get here? On a viscous cycle of cause and effect. I survived the pulmonary embolism because I was a runner and had excellent lung and cardiac capacity. But once I couldn’t run, I lost that all very quickly. Now that I’m in remission, I’m carrying around extra weight – both from the water retention associated with kidneys that don’t work all that perfectly and the lack of running I’ve been capable of for the past year. Because I haven’t been able to run, my cardio and lung capacity has dwindled to where I can barely walk a quarter mile quickly before I’m sucking wind and my chest and lungs hurt from the blood clots.

Not going to lie, this cycle has had me frustrated and down the past few months. Which does not help motivate me to change anything about it.

This week I decided it was time to stop living in the past and lamenting all that I’ve lost in the fitness aspect of my life. Sure I have to start from the beginning as if none of the hard work I put in to get where I was at the peak of my game ever happened, but that’s not the end of the world. I know I can do it because I’ve done it before. There are different hurdles this time around. I have two kids who are active with extra curricular activities, my job is insane, I’m writing like never before and I’m older (and have a kidney disease) with dwindling energy and endurance. I could wallow at how hard all that makes it to work out on a consistent basis or I can get creative.

Today showed me the possibilities of the creative path with several baby steps toward new habits. I still practice yoga twice a week – most weeks – and I’ve committed to challenging myself more to get out of my comfort zone. I am still sore from my practice two days ago so that has proven a positive step. At work, where I used to work out religiously for an hour in the afternoons, I barely have time for a lunch break that doesn’t involve grabbing food and snarfing it down at my desk while I multitask sometimes multiple meetings. Today my counterpart and I ended up having a meeting on the treadmills. It wasn’t planned that way, but we decided to go for a quick break and ended up brainstorming issues while we walked. In the end, it was a meeting rather than a break and I still got to be active. She pushed me to staying on the treadmill for twenty minutes – her minimum. From now on, I’ll suggest a treadmill meeting any time possible. After work, Baby Sister had her tennis lesson where, instead of sitting on the grass with her BFF’s mom chatting for an hour, we both brought our rackets and played tennis in an adjoining court. Both of us used to play but hadn’t held a racket for years – almost twenty for me. We sucked but by the end of the hour we were successfully returning. She played competitively, me recreationally. She got her skills back quickly – including a serve. Mine will take some time but my body is remembering how it feels to play and how fun it was.

I felt energized and fulfilled at the end of the day. It hadn’t taken any effort to increase my activity level almost double (as measured by my fitness tracker in the form of daily steps). The momentum of taking small steps toward a goal, however lofty, should not be taken for granted.

Back on the roller coaster – why my kidneys can kiss my a$$

It was December 2014 and I was looking forward to getting off all of my medications after a year of remission under my belt. I gleefully said goodbye to immuno-suppression drugs mid January and hoped never to look back. But the Universe is a nasty bitch and it appears I do not get my wish. Within two weeks my symptoms returned and I had to start back on maintenance drugs. Drugs which I have had to increase the dose of already hoping it works. Today my doctor laid the ground work for the potential of going back on immuno-suppression if the higher dose doesn’t keep things at bay.

I know it could be so much worse. I could be looking at chemotherapy (which she still has on the back burner just waiting for me, I fear!). I could be in renal failure looking for a transplant or facing dialysis. Instead, I’m taking a drug that has only one side effect of lowered blood pressure and won’t damage anything if I take it forever. But I’m back to living with the roller coaster of sodium restrictions, fluid restrictions (bye bye proper hydration, it felt amazing while it lasted!) and daily water weight insanity where I gain a pound a day of water until my clothes don’t fit and then take damaging diuretics for a couple of days and start the cycle all over again. I love roller coasters but this one I could do without, thanks.

People, do not take your kidneys for granted. While I’d like to tell mine to kiss my ass on a daily basis, I really would be happy if they just worked the right way every day. Can’t we all just get along inside this body of mine? It’s been two years since I’ve eaten meat (well, there was that one indulgence, but it was only a bite!), I’m a pseudo vegan who just eats cheese and butter occasionally, and I don’t eat eggs or shellfish except on extremely rare occasions. Why is that not enough? Because I’d probably have nothing to bitch about if everything worked fine, right? I can’t imagine the shape I’d be in if I wasn’t willing to go to such extremes to take care of my body the best way possible. And I can’t help but be envious of others in my gene pool who couldn’t care less about what they eat or drink and still have perfect numbers in their blood work. You know who you are. And yes, I secretly loathe you for your perfectly working kidneys that I’d give almost anything for.

If you need me, I’ll probably be asking a million questions at every meal that I don’t prepare myself to insure I’m meeting with all my dietary restrictions, or doing yoga so I don’t lose what’s left of my mind. Oh, and writing. I’ll still be writing!

The Reluctant Vegan and Her Sweet Rewards

Three months ago my doctor dropped her latest dietary restriction bombshell: no more animal products at all. Yep, after a year of vegetarianism I had to shift to being vegan. I fought it – tooth and nail – because: dairy. I’d already cut out most of the eggs I ate and all of the shellfish because of their high cholesterol content. But can you fathom a life without butter, or yogurt, or cottage cheese? Or baked goods made with eggs? Yeah, me neither.

As is my nature, I argued with her about why this extreme measure was necessary. My timid, soft-spoken doctor threw the most solid argument there was right back at me. “Your cholesterol is too high and you’re the one who tells me you want to do things naturally without drugs. This is the only way.” Our relationship over the last couple of years has been one filled with negotiation and partnership – aspects I feel necessary for proper treatment but which I fear are rare to find. Over the course of the appointment we came to the following negotiated deal: if I changed my diet and improved my cholesterol numbers she would consider a faster weaning process for the immunosuppression drugs that I can’t wait to stop taking. I’d been focusing on getting through every day of that drug with the mantra “December” repeated over and over. To hear in September that the long-anticipated December didn’t mean what I thought it meant but rather the start of a six month process of lower doses, I was ready to explode with frustration.

I was a woman on a mission. A vegan mission. I read the book she recommended and felt a little better prepared for this difficult and extreme lifestyle. And was happy that it wasn’t what I think of as nazi vegan that she was ordering – where if there is even a hint of butter or eggs involved in the making of a dish you have to reject it – but rather 90% of total calories from plant sources.

And so began the three hardest months ever in terms of eating. I gained weight because more often it was easier to eat nothing at all than try and figure out something that worked, which resulted in the evolutionary response of retaining everything because we’re in a famine. When I did find something that was allowed, it usually was an overabundance of carbs with a side of more carbs. It was hard not to be dejected about food every day. Eating out was a chore and even my patient and supportive husband got frustrated with my attitude on many occasions of attempting to eat out together when I’d pour over the menu only to declare “there’s nothing I can eat here”.

The last month has been like the last stretch of the longest race in history forcing myself to eat within guidelines until I could get my blood work done. Frankly I was convinced I wouldn’t see enough of an improvement to justify this insanity and was willing to succumb to the dreaded addition of cholesterol medication so I could go back to “just” being a vegetarian. God what I wouldn’t give to be able to eat fish again!

And then I saw my numbers…

Triglycerides down 100 points! Total cholesterol down 50 points! An improvement in every category – even when I didn’t eat anywhere near the pristine goals I had been given. (Have you tried to eat every single meal of vegetables when you only shop for groceries once a week? You have to buy in such large quantities and then they spoil before you can eat them so you end up wasting far too much. First-world problems, I know.) Staring at the data that didn’t lie, I couldn’t decide if I was happy or mad. I was beyond ecstatic that my efforts had produced such drastic changes in my blood work. But that also cemented the need and the validity of this damn vegan lifestyle that I don’t want to maintain.

This morning was my appointment with my doctor. Given the success of my efforts from the last three months, I had spent the last two days gearing up for my latest negotiation – being done with immunosuppression. I even skipped taking my morning dose in hopes she would agree and I’d never have to take the damn thing ever again. As it usually happens, I didn’t get exactly what I wanted but somewhere in the middle. We talked about how hard it is to eat well-rounded meals and the drawbacks of being vegan. To my surprise she said she agreed that fish once in a while if I maintained the lack of milk and eggs would be okay. As for the immunosuppressant, instead of a lower dose for three months and then more blood work that she wanted, or the stop taking any of it today that I wanted, we compromised on a half dose for one month and then bi-weekly blood tests for two months to monitor closely whether I stay in remission. It means I don’t have to refill that prescription ever again. What it will cost me out of pocket for lab work after my high deductible resets next month will be more than worth it.

So, I remain a reluctant vegan who does eat fish on occasion and dairy only rarely. Things could definitely be worse! It is hard to believe I’m nearing the very end of this crazy bout of kidney disease. *knock on wood* I hope my kidneys have been fooled into forgetting they have anything wrong with them and remain forgetful long after I stop taking the drugs that created the forgetfulness in the first place. Four more weeks and the real question of what my life looks like long-term can be answered. Now if you’ll excuse me, I’ve got some tuna to eat!

Life without judgement

It has been almost two years since my brush with death changed everything about how I live my life. The difference in myself was very stark this past weekend at the annual family reunion with my mom’s extended family. All the cousins who were my best friends growing up – and still are – plus their spouses and kids all gather at a resort with a water park and spend the weekend playing in the sun together. It is always a blast and I always have a fabulous time but usually it is accompanied with lots of internal stress and dialogue about having to be in a bathing suit around others who are more “-er” than me… younger, thinner, prettier. You get the picture.

This year was different. This year I never once looked in the mirror with a critical eye – or at all come to think about it. Nor did I constantly look for strategic ways of sitting so I looked better (as if that way even exists since your body is your body regardless of how you sit). I just had fun with my kids without a care in the world. No cover-up included!

We spent hours – literally – walking back up the hill and the stairs to the top of the water slides, all the adults taking turns sliding with all the different kids – my own, my nieces and nephews and my cousin’s kids whatever they would be called in the genealogical sense. Several times I thought with gratitude about how far I’d come in a year – from being physically incapable of it to rocking all the cardio without losing my breath in the process.

It made me think about all the people I’d ever compared myself to in the past to make myself feel better and wonder what things they could say they had overcome to just be where they were. Kind of humbling when you think about it…

A month ago I had my yoga world rocked to the very foundation. Weeks later, I’m still discovering things in my practice that are transforming and growing from that one ah-ha moment when I realized that I don’t use my entire foot for anything. It occurred to me this morning, while my 147 pound yoga instructor sat on my sacrum to illustrate how to stretch my straddle deeper, that if you’d told me three years ago that yoga could still be fresh and new every week that I wouldn’t have believed a word. And that the old Terra might have given up after that ah-ha moment because the inner voice would have convinced me that I was no good at yoga. Instead I’ve left all expectations of everything at the door and find joy in the newness of re-learning every pose differently. As I always say, yoga is a journey not a destination. I’m consciously having to take my own advice not to judge myself against anything – including myself from four weeks ago when I never used my heels. Now I know how people can practice yoga for a lifetime and I love how every trip to the mat brings new insights about myself – all because I leave the judgement out of it.

The biggest hope I have is that my girls will see me just as their mom and remember only how much fun they had doing things with me. I already know they don’t see me as I see myself. Once I called myself fat and my oldest looked at me funny and said “you’re not fat, Mom.” Which stopped me in my tracks. If you haven’t read this article about When Your Mother Says She’s Fat , or watched this ad about doing things “like a girl”, check them out. They both helped me see where I was my own worst enemy in putting myself down because I didn’t measure up in the areas society focuses on.

In the grand scheme of things it is more important to live every moment regardless of how we feel about ourselves – especially when faced with the reality that every day might be your last. If you wait to enjoy life until you’ve lost that last 20 pounds (or fill in the blank with your own demons) it might be too late to make the memories you are putting off. Your kids could be too old, you could be too old, or the opportunities could have passed you by. Make every moment of every day count, no matter what. And leave the judgement out of it!

This Time Last Year

Occasionally I wax reminiscent and look back through my blog posts. Even less frequently I find coincidences that are worth mentioning in a blog post. Rarely do the planets and stars all align to create a new post such as this one. This time last year (give or take a couple of days) I blogged about how “Fine” no longer applied. Here’s a quote to recap:

 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.

You can read the whole post HERE. It was a dark time when I had more questions than answers and I was just learning that there was more insanity going on with my health. I hadn’t even gotten my diagnosis yet.

Here’s where the planets aligned…

This week, I sat in the exact same exam room as I sat the day I found out that literally I’d almost died. This time it was for my yearly physical with my doctor who has become what I think soldiers who face danger together become to each other. The same room. What are the odds? I could barely contain my joy as I recounted the remission details and what I’d been up to with my nephrologist since I’d seen him last. We laughed and at times sat in wonder as the facts I was sharing of this “nutty year” sank in.

I thought it was just going to be a happy day, had been looking forward to it all week in fact, until the part where he left so I could change into the snazzy gown for the exam part of the visit. I sat there alone waiting for him to return, in the same spot in the same gown as that first fateful day when I waited for an EKG and embarked on the scariest twenty four hours of my life to date. I also thought about all that I was going through a year ago when I thought I had put the pulmonary embolism and craziness behind me to find out everything was still frightening and unknown. Just like the first time I sat there, I was overcome with emotion. I know they were tears of relief and joy – the kind I still have in abundance whenever I think about how quickly I recovered – but they were still tears and they were streaming down my face when he returned with his medical assistant in tow. I blubbered like an idiot about how I didn’t think I’d thanked him enough for saving my life. He got emotional too while he tried to listen to me trying to compose myself enough to take deep breaths for him.

I’m sure the MA thought we were both off our rockers. Can’t blame her, she is new and not one of the regulars who still know me by sight, even after all this time. Then we were joking and laughing like old friends trying not to be awkward while avoiding admitting we’d just cried together during a routine physical. I left knowing I’m on the final stretch of this insanity that started what seems like forever ago, yet was only seventeen months ago.

This time last year I was also attempting to participate in CampNaNo to write my second novel. It didn’t happen with everything else going on then which overshadowed my writing. But I still wrote that novel in November and I’m now editing it in hopes of publication someday – despite what else life threw at me. Because I’m not a quitter. But more importantly because almost dying gave me a greater perspective of what making each day count really means.

I’m still not sure I know how to be this happy. One thing is for certain, I’m glad I’m still here to figure it out. And I’m not wasting a single day because I know tomorrow is not guaranteed.What were you doing a year ago? And what are you doing to make every day count?

Happy Spring – celebrating with tears of joy

Today is the first day of spring and a huge milestone in the fight to win back my health. 

I headed to the doctor this morning for my routine monthly checkup. I had spent almost a week preparing to renegotiate my treatment plan knowing that my lab work from last week showed another marked improvement. It is no secret that I loathe taking prednisone – especially since I can’t maintain my weight even though I am a vegetarian who works out six days a week. Which is exactly why I fought taking it as long as I could. The last two months I’ve had to sit back and watch the number on the scale slowly inch upwards. Yes, slowly. BUT, when faced with the prospect of a small weight gain every month, for an open ended length of time, for a minimum of the next TWO YEARS, that you can do nothing about, it is very discouraging. I was prepared for this “renegotiation” to require a LOT of willpower and I was prepared to bully my doctor if necessary. I wasn’t asking to change my treatment, just how long I had to endure it before I could come off of it. When she said “I agree” with zero resistance or hesitation, it threw me right off balance. Wait. You agree? What’s going on here? 

Then she said the best four words I’ve heard in a very long time: “You are in remission.”


FULL remission.

I didn’t realize (because clearly she failed to tell me) that I have been in partial remission since December. And now I am in total remission.

Not sure it has fully sunk in, even still.

Yep, still crying tears of joy every time I think about it. Luckily I was able to hold it together until I got to my car…

That isn’t even all the great news! I only have to be on this successful treatment plan for a year total from the time I was in partial remission. She said she’d been thinking about it and the recommendation is to do the treatment for one to two years but since I’m doing so well she didn’t think I really needed the two years like she told me initially. So here I’d been thinking I had two years from the pie-in-the-sky goal of being in total remission whenever that was when in fact I only have to continue until THIS December. That is less than the time it takes to grow an entire human in my womb. I’ve done that twice and both times it felt like the time flew by. Eight and a half more months and I’m done. D.O.N.E. – DONE!

But wait, there’s more! I’m doing so well, complained enough, and proved that my fear of weight gain was a reality so well (I love data!) that she also lowered my dose of the dreaded prednisone. It is like winning the lottery without even remembering you had bought tickets. An end in sight AND a lower dose of the worst drug I’m taking. 

I’m not sure I know how to be this happy. 

As amazing as it is, it has only been eleven months since I first showed signs of this crazy disease. I didn’t even get my diagnosis until ten months ago. And now I have officially kicked it in the ass all the way to the curb. Fuck you, kidney disease, I’m way stronger and I’ve proven you are no match for me.

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…

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.

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.

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?

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.