Celebrations and Setbacks

My Story

This week has been a weird one.

I knew the first half of March was going to bring a lot of indulging; calories don’t count on your birthday, right? One thing my therapist and I talk about working on for me is being more social… it’s HARD when eating out is too much of a temptation to overdo it, and leaves too many opportunities to overindulge, but I can’t withdraw too much… I’ve done it and it’s hard to get out of that hole. But last week was particularly packed – I went on a date, we had a work event where drinks were FLOWING (hello open tab!), and was followed up by a second date and a bridal shower on the same day, and culminated with my birthday. Now, sure, I could have suggested an alternate location for the second date – I’m not one to pass up BBQ when faced with a pulled pork benedict – but I didn’t. I could have kept my alcohol consumption to a minimum at both the work event and the bridal shower… but I knew there was no way I’d take it easy on my birthday… I knew what I was getting in to.

Obviously, as a seemingly normal (now) 32-year old, I want to go out and have fun! I don’t want to be tethered to this invisible disease, but I need to remember that I’m NOT like everyone else. I need to be mindful of my sodium consumption and drink water accordingly. When I went to bed last Sunday night, after a solid week of overdoing it, my body had had enough. I woke up an hour later, unable to get my heart rate down – thanks to my Fitbit, I could see that my heart rate was hovering around 100. I was just laying in bed – how could this be possible? As I lay in bed, practicing some deep breathing, and drinking water, I contemplated calling my sister – I didn’t want to freak her out! But after about 25 minutes I caved as she I and I troubleshot over the phone what could be happening. I finally suggested going to the ER and after a whole hour, I was in an Uber on my way to meet with her.

On intake, my blood pressure is taken (yikes!) and an EKG (normal) and at that point, was directed to the waiting room until a doctor was ready to see me. I wasn’t keeping track of time, but I’m guessing it took about an hour. And, while annoying, it gave me some peace of mind knowing that I wasn’t in bad enough shape to be considered for immediate care. My sister and I went back, I made contact with no less than 6 different people. They took some blood to run some panels and then we waited. And waited. And waited some more. The blood pressure cuff was left on my arm to take readings every 20 minutes (I timed it) and eventually was given the word that everything was normal. I mean, my blood pressure was still very high, but was advised to take it easy, HYDRATE, and handed a packet of paperwork all about heart palpitations and told I most likely had a case of “holiday heart syndrome.” COOL. Within that packet were suggestions like no alcohol (easy), chocolate (yeah, okay), or caffeine (WHAT?!).

I finally crawled into bed around 3, where I ended up not falling asleep until closer to 4 – now I had sleep anxiety! Was it going to happen again? I wrote to my boss and said I wasn’t going to be in on Monday and proceeded to finally fall asleep until about 9:30am. I was embarrassed and assumed people at work would think I was just hungover from birthday celebrations. In all actuality, all I got was a case of dehydration and a fancy $300 plastic bracelet with my name on it.

So, here we are today, a full 5 days later. It was a long, non-caffeinated week and after talking to my PCP today, my plan is to work on hydrating appropriately (and apparently LaCroix doesn’t count) and not obsessing over checking my blood pressure – he said once a week, right after I wake up is sufficient. We’ll reassess at my annual physical in July.

So, what did this teach me? I know that I had been a little too lax in my diet and that I need to get back into the gym. So, my goal is to ease back into working out – maybe start back in with some walking and yoga, up my water intake, and I really just need to put myself first.

I went to the grocery store and can’t wait to get back into the kitchen this weekend to get back on my meal prep and planning with some old standbys and something new, too.



How do you deal with setbacks? What do you do to stay motivated when you find yourself too far down the wrong path? 


lets start at the beginning.

My Story


I’ve been trying to decide how best to start this but thought a simple look back at how it all began would probably be best. So here goes…

I have Kidney Disease. You know those two little fist-sized, bean-shaped¬†organs on either side of your back/body? Yeah, mine don’t work too well. They work fine enough, but they’re a little small for one, and they’re only working with a B- average (GRF 84). It makes sense that my kidneys thing they’re in their late 60s… I mean, I have always generally felt older than my 30-something years.

So, how did I get here? Well, no one knows for certain. My mom always thought it had to do with the medicine she was pumped full of while she was pregnant with me and my brother — you know, to speed up the growth process in the event of an early delivery. She was on bedrest – in the hospital – for 10 weeks before our eventual 3 weeks early arrival. My brother has never been tested, and of course, those medical records no longer exist… conveniently only kept for 16 years, 1 year short of the 17 it had been since I was no longer a patient at that practice; she always did think this was a little suspect.

When I was 25, I moved to Chicago from Kansas City. Not that I had been to the doctor too many times in the 3 years I lived there post-college. There was the time I pretty much had Whooping Cough and they gave me an inhaler which I never actually used, and the time I re-broke a finger playing kickball. Otherwise, I wouldn’t even be able to tell you the name of that physician. In your early 20s, you think you’re invincible… except for the finger thing, that was just a fluke. Once I was enrolled in my new company’s health plan, I set out to find a doctor. I didn’t have to look far; I ended up seeing the same general physician as my sister, the office happened to be on the 2nd floor of my office building. I literally didn’t even have to go outside to get there, and for this lazy person, it was all I needed. I scheduled a new patient appointment for a few months out and went about my life.

Now, I don’t know about you, but I always schedule my annual physical around my birthday. So in March of 2012, I went to the doctor, hopped on the scale, she took all my vitals, which I assume were normal but now I can’t remember, and as she reached for the doorknob, I went in for the kill. I had always suspected that I might be anemic so it wouldn’t hurt to have it looked at in an official capacity, right? I mean, I had pretty much already self-diagnosed myself (Thanks, WebMD!) and was fairly certain this was the case here, too. So, she wrote up a script for a full metabolic panel, plus a few other tests. I went back out into the waiting room and over to the lab while I waited my turn.

I’m sure the normal number of days passed with no news, but then I got a note back saying that while I didn’t have a dangerously low red blood count, some of my other levels looked high, namely my creatinine, which is a measure of waste in your bloodstream, which everyone produces. She wanted me to come back in and get retested, and so I hopped on down to the 2nd floor, gave them more blood, and even some urine this time, and headed back upstairs.

I’m not sure if we did another round of blood/urine work at this point, but by now, I was starting to worry. She recommended an ultrasound, which sounded daunting and was something I wasn’t even expecting to get until someday, way down the line when I’d hopefully be married and trying to have a baby. But, here I was, alone and 26 in a dark room at the hospital with an ultrasound tech getting my sides covered in goo and the general function of my kidney’s checked. Turns out, they’re a little small and under-functioning.

From there, it was all kind of a blur. I had a CT Scan done (which every 26-year-old woman wants to get done on their abdomen. Sure – just shoot those rays right near my ovaries, thankyouverymuch!) and even had the pleasure of peeing in a jug for 24 hours on Sunday, and then lugging it to the hospital in my gym bag during the morning commute.

With a final diagnosis in the bag (literally?), I remember crying on my sister’s shoulder. I had no idea what was in store for me. I didn’t know what to do. I didn’t know what to eat (so I pretty much didn’t). I lost 10 pounds in 2 weeks. I couldn’t hike up a mountain with my friends in June and spent a lot of time feeling sorry for myself. I wasn’t at the point where I needed medication for high blood pressure, and certainly not dialysis.

One thing I didn’t do was hide from it – I’ve been very open about my diagnosis and I think that’s one thing that has really benefitted me. I did a ton of research, followed bloggers on Twitter and added them to my Google Reader (RIP). I don’t even think Instagram was a thing in 2012, but you can guarantee I would have been digging for people using the #KidneyDisease and #LowSodium hashtags. I bought low-sodium cookbooks and developed an even greater love of cooking. I was doing really well (-ish?) for so long. I was checking my blood pressure on a regular basis, exercising, eating well, all of it! Then things slowly slipped. I began giving myself a little leeway, and then that turned into a lot of take-out and more beers than I should be drinking.

So, here I am 6 years post-diagnosis and looking for ways to hold myself accountable. Molly Makes Food is going to be a place where I write my thoughts about living with Kidney Disease, what has happened since my diagnosis, but mostly what I’m eating.