So, here is my story….Take it with a grain of salt if you will.
Like everyone else, I have gone through life with all the normal trials and tribulations. Ups and downs, good days and bad, car accidents, blah blah blah. Then in 2015 I found myself in a hospital bed with major organs not doing what they are supposed to do. Long story short, a bunch of tests, 2 paracentesis procedures, over 20 liters of fluid, and it turns out I have advanced Cirrhosis of the Liver.
In the beginning I felt like “I got this!” All my life I have loved food, cooking, and everything about it. That feeling of “knowing” food combined with being overwhelmed by all of the information the specialists were giving me on how my disease could KILL me if I messed up, meant I didn’t ask the questions I should have.
The problem with liver disease is everyone assumes you are an alcoholic despite anything you or others tell them. Because of this all of the doctors were to busy drilling it in my head that I would die a slow horrible death if I ever drank again. So naturally with all of this in my head I did not ask nearly enough questions before I went home from the hospital.
I was however very “Lucky” to have a hospital dietitian give me two-page document telling me ALL the things I could ever need to know about living a low sodium lifestyle. (if you didn’t pick up on the sarcasm in that last sentence let me confirm for you it was pretty thick.) The document pretty much said one teaspoon is more than the 2000mg a day I could have (a teaspoon being about 2300mgs sodium), and it had a recipe for grilled chicken using Mrs. Dash No Salt Seasoning. Keep in mind that this document said nothing about watching the fact the almost all poultry and pork is in a salt solution which makes a serving way more sodium then I should be having for a portion, and that I should only purchase poultry or pork that is NOT in a salt solution. It also, did not inform me that sodium is in just about everything. Hell, two large cloves of garlic is 2-4 milligrams of sodium. I know 4 milligrams is not a lot of sodium, but it helps put things into perspective when trying to understand the scope of how much one really needs to pay attention to what they eat. As well as how very little one is educated regarding the lifestyle change they are about to undergo.
One of the many things I did not think or know to ask is what to avoid or what else other than sodium I should be mindful of.
FYI… the answer…. EVERYTHING.
My diuretics meant I peed out all my potassium and other vital minerals which could put me in the hospital. To little potassium, sodium, magnesium, blah, blah, blah, could kill me. To much of those and many others could kill me. One of the big ones is potassium.
What is the first thing someone who can’t have salt looks for, a salt substitute.
What are salt substitutes? Potassium Chloride.
What should anyone on ANY kind of medication (not just heart or liver meds) be mindful of? Drug interactions with Potassium Chloride.
One would think this would be on the top of the list of things a specialist (hell, anyone of the four thousand people I talked to in the hospital) would tell you, is that potassium is in just as many things as sodium and it NEEDS to be watched.
NOPE… Eat low sodium, quit drinking, quit smoking or you will die, go home, see you in a few weeks.
Fast forward a few days later and I am at the grocery store with my sister looking for a few things to fill my cupboard until I could go through all my food stuffs to rid my life of all things high sodium. My guess is that because I was not hungry at the time, I was not thinking it was a “full” shopping trip, and I had my big sister there to help, it actually went really well. We found lemon ice cups that were zero sodium, some dark chocolate things, a large salad from the salad bar, and a few other small finds.
So, I went home still thinking “I got this”.
Then I went through my cupboards. That was the first time I wanted to cry a little.
I made it through one shelf and walked away. I watched some TV and let myself forget things for a few minutes.
Then I accepted the realization that I needed to do a little more research. Hours of research later AAANNNDD …
HOLY CRAP….
Second time… wanted to cry a little more.
This time I went to bed and went into a nice woe is me sleep. The next day I went to the grocery by myself to do a little recon to see if what my research was telling me would be true. I left my house feeling like I could conquer this, I could be those super awesome people you read about that overcome all adversity.
Aisle after aisle the horrible feeling in my belly grew worse and worse, and this time it wasn’t ascites. All I could think of was that the doctors thought alcohol was what I would miss… REALLY.
What sick kind of torture is it to take SALT away from a cook.
I left my cart in the isle and went home.
Not forgetting that through all of this I was on 9 different medications and carrying 15 pounds of fluid from all three water retention symptoms, ascites, edema and third spacing. Plus dealing with all the symptoms that advanced liver disease and gall bladder disease present with.
Yet I felt I had to be the strong one and not complain, not say anything, not ask for help. Thanks to my doctors drilling it into my head that if I mess up I will die, I was also terrified I would take a misstep and end up back in the hospital with the last 3% of my liver dead because of something I messed up.
I understand they are jaded and 90% of their patients are in fact alcoholics when presenting with liver disease, but it does not change the fact the it sucked to be one of the minorities that just wanted to get better and get answers.
Side note: My husband still drinks & smokes (he has since quit smoking) and I had no issue quitting either – Mary 1 Doctors 0
So, after crying long enough that I felt I should have lost half of my water weight, I decided I needed to come up with a plan. The problem with that is that there is no good place to find the information I was looking for.
There are eight million places to find the information I was looking for. It is like trying to put together a puzzle when the puzzle pieces are hidden in all your neighbor’s houses across your entire county.
My plan: Empty EVERYTHING in my house that I cannot eat, and only keep a select few things that my husband will still use, like his hot sauce, pickles, chips etc.
Track EVERYTHING, even though it has its flaws, I started using MyFitnessPal.com to track everything I ate. A little tip, the website gives you more information than the mobile app. I made a promise to myself that I would do it right. No half-assing it. Track it all, down to the extra olive oil I use to sauté my onions, glasses of water, even the extra creamer I put in my coffee.
Buy a GOOD food scale, AND USE IT! Weigh everything, really teach myself what these product manufacturers considered a serving size. (two tablespoons of salsa! Seriously! Who the f*&% only eats two tablespoons of salsa).
Start with ONE recipe… only one. Do not try to fix everything at once. Eat simple, eat plain, clear my salty palette and pick one recipe and perfect it. I picked pizza sauce.
Having a plan was a good step, implementing it was the hard, sometimes seemingly impossible step. My neighbors made out like bandits though! They got cereal, chips, canned goods, syrup, all sorts of stuff. With my cupboards empty, off to the store I went.
Not going to lie, twenty minutes in I went to the restroom and cried for a minute. Nothing like sitting in a dirty Jewel Osco bathroom to lift a girls’ spirits, ya know.
It took me 15 minutes to find a can of Del Monte No Salt Added Corn and two cans of Del Monte No Salt Added Peas. The store carries them as regular items, but because people are slobs and never fix what they mess up, all the canned goods were mixed up.
One thing people never seem to realize is how their actions affect others. Every step you take in life is a choice, each one causing a resulting effect. Something common like being shitty to someone because you are having a bad day down to something small like not putting canned goods back where you found them both can have a huge effect on someone else.
Those miss-placed canned goods changed the path of my entire day.
Good or bad my life was impacted, my choices influenced, resulting in me losing a little hope for a moment. Given the right situation that loss of hope could have had much more dire consequences. It could have been the proverbial straw that broke the camel’s back.
Thankfully for me it was just another stone on my path.
From that moment on I decided I would make a conscious effort to be aware of my choices and if or how they would affect others.
After that shopping trip I added another item to my “Plan”.
Only go shopping with a list.
I would write a list of what I NEEDED and shop for that. Once I was done with my list only then would I shop the aisles for other finds.
The result of this was a surprising stress release. I would get my eggs, potatoes, vegetables, ground beef, un-brined chicken, etc. and then walk to isles in search of other things. This way, bland or not, I knew I had a meal that night to make and anything else was a bonus.
That’s when it finally started to be fun for me. If I found something my mind would go to all the things I could make with it, even if I didn’t have all of the other ingredients it gave me hope that I could find them.
As time passed, I would find more and more hidden gems at the stores by me.
One of the tricks I learned early on was to think of sodium like money. If my limit was 2000 milligrams per day (2grams) or less then I would think of it as it were $2000 dollars. It’s funny, if I was asked to remember throughout the day what 70 plus 100, plus 50, plus 30, plus 250… and so on and so on, by the end of the day I would look at you cross eyed. You ask me how much money I have left after spending 70 bucks, 100 bucks, etc.… I would be spot on! So that’s what I do.
Subsequently, I have found it a useful way to explain to others when they ask about my disease and restrictions.
Through all of this one of the most important things I have learned is that me and ONLY me can tell what is or is not good for my body. Others may discourage you, try to bring you down, or give you information they think is correct. Most of this stems from the fact that they are uneducated, which all of us used to be.
So instead of being mad, educate them.
If they do not want to be educated then let them live their life and you move on with yours.
The reason I wrote this is in an effort to help others by sharing my own trials. It is not an easy journey. I will say you are the only one that can dictate the outcome.
You will get exactly what you put in.
I have my cheat days and I suffer the consequences. There are good days and bad days. For the most part things have gotten WAAAYYYY easier. I no longer dread going to the store.
That being said, I still have my fair share of bad days where I wish I could just swing through subway, or make a sandwich quick at home after work.
The worst is when someone says to me “it’s not that big of a deal”, well it is. The fact that people would think my health was “not that big of a deal” hurt me a lot more then I realized it would. I know that I was probably thinking too much into it, but that didn’t make it hurt any less.
All of this has taught me that I am the only one that can control how things or people influence me. By giving everything 100% of my effort I in turn get 100% back.
The days that are bad are the days I decided that 90% will do.
I may not always feel like getting up 15 minutes earlier so I can make eggs or eat a breakfast bar. But by doing so my day starts off better.
Pushing yourself to always start with 100% is easier then dealing with the slippery slope that only giving a partial effort spiral into.
If you start your day with 90%, by the time you sit down at the end of the day you only have 10% of yourself left. I am by no means perfect, but I am proud to say I have more 100% days in me then I do 10% days.
Hopefully my words inspire you to have the same.
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Thank you for sharing your story and journey!
I relate to so much of what you have said! Diagnosed with cirrhosis in March, huge changes in just those months. I learned how to cook well without salt and with lots of other seasonings. Fish every day for low sodium and high protein. Like you, I don’t miss drinking, but the thought of no or stressful restaurant meals depresses me. I was doing very well at managing the disease, and then three weeks ago I fell and broke my pelvis! So now I am in a crappy rehab place trying to walk again. They seem to have not heard of low sodium diets and despite many talks with the dietician, I am still getting food with probably too much sodium, and I am very afraid of getting ascites again, so I eat little of it. And this place is mostly a nursing home! They must have many residents with heart issues or other things that require a low-sodium diet. So frustrating!
It is VERY frustrating!! All you can do is take on one challenge at a time and remember you are not alone in your journey! Feel free to email questions to mary@mylosolifestyle.com
Thank you for this website. I started a sodium restriction diet 3 weeks ago. I was really shocked when I saw how much was in everything. I appreciate having this resource.
Glad I could help! Feel free to email questions anytime to mary@mylosolifestyle.com
You inspire me!!! What a fantastic read, wow. XOXO