Coping With Life

 It's been a weird and wild few weeks. I finally know what stage I'm at with the CKD (3b); I found a new (and wonderful) rheumatologist since my last one transferred away; I am coping better with the loss of my best friend; I lost my cousin today.

Did I leave out anything? I don't think so.

Life comes at us so fast sometimes that we can't get a close enough look at the many things we pass through. I'm trying to be better about the whole "one day at a time" thing. I can't believe it's taken me so long to realize that I cannot change the past, can't always control the present, and cannot predict the future.

I was joking to one of my nieces earlier that the only thing good that happened in the past few days is that Walmart included my address in the grocery-delivery zone. Damn, that was a long-winded and awful sentence!

When I got the news about my kidneys, it was served up with a side order of "Oh, yeah, and as long as you are on these disease-controlling medicines, they won't get better".

I think I actually laughed when the doctor laid that one out for me. I think my new doctor might think I'm a little nutty.

I'm still upset that my very first nephrologist did not clearly explain dietary restrictions to me. At the time, I was still quite addle-brained from the sarcoidosis. I had so much trouble comprehending anything. Maybe he did say something? Whatever.

My kidney function has already improved since I researched and started eating the right foods. I miss my avocados, Greek yogurt, nuts, and all the green food but... My filtration numbers are so much better that I don't mind. These days, I'm eating many of the things I was avoiding because I didn't think they were as healthy. I still can't believe that my "healthy for the kidney" diet includes pasta, white rice, and white bread over all the whole wheat and green veggies. 

And while I'm talking about food and other ingestibles... Let me just say that oat milk is nasty in coffee. It's weird-tasting and has a slightly slimy texture. It ruins every good coffee I've ever loved. I'm now drinking my Kaladi Brother coffee with either rice milk or, on a good day, a tiny bit of half-and-half and brown sugar. Also, I'm so sick of tofu that I hate looking at those square packs of it. I've had it braised, baked, air-fried, and sauteed. I've fixed it as fake chicken, fake barbeque beef/pork/chicken, and I've even tried to make a stir-fry with it. 

I have discovered some tasty recipes and snacks. I am now in love with alfredo sauce. I like to make a chicken and pasta dish with it. And Boom Chicka popcorn is my everything. It's lighter and airier than my popcorn made in the Ninja. There is a dairy-free ice cream made with cashew milk that I will be erecting a shrine to at some point. 

So, yeah, there are some foods that don't completely disgust me. 

Maybe the best news this year has been the whole Walmart-delivers situation. I was able to order all my groceries and household goods in one go. However, my shopping trips have always been a treat because I get to hang out with my baby brother and lovely SIL. We still hang out. Especially since I now have to go almost an hour away to another town to see my rheumatologist. I'm not a person who loves long car rides. Also, I'm from Alaska where a long car ride is rare. I could get from Anchorage to halfway to the Alcan in the time that some of these Iowa trips take just to shop or get medical care. These people think nothing of driving 200 miles to do something. 

The only thing I don't really want to talk about today is my cousin. I can only say that she was much too sweet and sensitive for this crazy time we are living in. 

Anyway. That's been my life. That's why I have not been on here for a minute. 

Peace

--Free

Open Letter to Doctors, Nurse & Dieticians

 So. I have had this whole CKD thing on my mind night and day lately. After I got my last lab results back, I spent several hours just sitting in the dark of my room, crying and frustrated, and mad. Praying helps. Thinking of all that I have to be grateful for helps. But I'm still just so irritated.

I'm irritated with myself, irritated with this damn sarcoidosis, irritated with the lack of public information about health issues, and just irritated with it all.

The sarcoidosis started this ball rolling but the blame for it picking up speed lies first with me. I let my weight balloon. I wasn't being careful about reading nutrition labels. I didn't take the time to realize that "eating healthy" in general doesn't mean "healthy for everyone". I didn't pay enough attention to my own health. I was so focused on my sarcoidosis in general that I didn't think enough about the specifics.

The biggest frustration is that I waited until now to educate myself about CKD. The next irritation is that in the US we don't have enough public information about nutrition and diet. We have a lot of noise about it but not enough useful information.

Nutrition labels are focused on the basis but they are not always on the up and up. The clearest information on a nutrition label is for anyone trying to lose weight. That even gets a little tricky when there is hidden or unclear labeling of ingredients.

Labels can disguise sugars and salts and other minerals by playing funky games with the names of those things. The average person trying to lower their sodium or sugar intake might not know to look for the different ways those things are named.

I found one article online that points out the different ways to "find sodium". Find sodium - because it might be hidden. Some ways sodium appears on labels?

• Monosodium glutamate, or MSG (often added to Chinese food)
• Sodium citrate
• Sodium sulfite
• Sodium caseinate
• Sodium benzoate
• Sodium hydroxide
• Disodium phosphate

At least, in this case of this list, "sodium" is part of the name. The other part of this though is when we are drawn to a particular product because of how it's described on the front label. This same article points out how the touted "low sodium", "unsalted", "sodium-free", "very low sodium", "light" and "reduced" sodium mean. For me with CKD, I'd need to really be careful about buying items labeled as "light" and "reduced" sodium. And I will be careful - now that I know.

Let's look at sugar.

As with the sodium identifiers above, there are some sugars that are fairly obvious. But then again, there are so many types of sugar that unless you are involved with food on a more-than-average level, you might miss a lot of them. Here are just some from this page where they note that 

"Ingredients are listed by weight on packaged foods, with the main ingredients listed first. The more of one item, the higher up on the list it appears. 

Food manufacturers often take advantage of this. To make their products appear healthier, some use smaller amounts of three or four types of sugar in a single product."

And some of the names of these sweeteners?   

1. Barley malt
2. Beet sugar
3. Brown sugar
4. Buttered sugar
5. Cane juice crystals
6. Cane sugar
7. Caster sugar
8. Coconut sugar
9. Corn sweetener
10. Crystalline fructose
11. Date sugar
12. Dextran, malt powder
13. Ethyl maltol
14. Fruit juice concentrate
15. Golden sugar
16. Invert sugar
17. Maltodextrin
18. Maltose
19. Muscovado sugar
20. Panela
21. Palm sugar
22. Organic raw sugar
23. Rapadura sugar
24. Evaporated cane juice
25. Confectioner’s (powdered) sugar

Of that list of 25 items, I'd say that 11 are harder to spot as being "sugar" or a sweetener - unless you pay close attention. And I think that brands count on us not paying attention.

Another thing I recently realized is that some things are not even evident on food labels. For example, phosphorus is something I have to watch in my diet. Wanna try identifying that on labels? I didn't even know it was a thing to watch for before now...

What frustrates me about this is that brands are allowed to manipulate the information on labels at all. If cigarettes come with warning labels - and only x amount of people smoke them - shouldn't food labels be held to a higher standard? I mean, everyone eats. From the moment of conception, we are in some way affected by nutrition.

Remember when we found out that "diet" sodas weren't as healthy as would be assumed by the use of the word "diet"? 

So I am frustrated as much by the food industry as and the guidelines they are allowed to play with as I am by myself.

I didn't just now start to pay attention to my health. If you've read my blog at all, you've known about all the times I was tweaking my diet to add what I thought of as healthy foods. For the past couple of years, I've been eating lots and lots of greens and healthy fats. I've barely eaten any fast food at all in over 4 years. The only real thing I knew that I was playing fast and loose with was red meat. Even then I would go for the lean stuff. And I damn near went into debt the past year by switching over to fish and seafood. I stopped using cow dairy (except for my coffee creamers) and went full soy. I started eating tofu. 

Had I better educated myself I would have known that all green stuff isn't good for CKD. I should NOT have been eating bunches and bunches of collard greens with "low sodium" seasonings. I'd have known to watch for some of the "good fats" like my beloved avocados. I'd have known that switching from chips and cookies to seeds and nuts wasn't the smartest thing. I'd have known not to add chia seeds to my diet.

I right now have (or have given away) a king's ransom of "healthy" foods I can no longer freely indulge in:

• A jug of chia seeds that I was adding to daily smoothies of spinach and fruits.
• 3 different bags of brown rice and 1 bag of wild rice
• whole-grain pasta noodles
• veggies noodles
• whole-grain bread mix to make in my bread machine
• canned and frozen mixed vegetables 
• bags and bags of pinto beans
• frozen spinach
• tomato paste and sauce and stewed tomatoes (2 of the cans were reduced sodium)
• pasta sauce
• refried beans
• whole-grain tortillas

And on and on.

I was proud of how I was eating. I gave up orange juice last year when I was warned about it and started buying pineapple juice - for my spinach and banana smoothies!

So, basically, I was probably being kinder to my kidneys when I was eating a lot of pasta and rice and yellow cake with cream cheese frosting...

The thing that has made me maddest is that, if there were more specific food and nutrition education, there would be fewer people dealing with CKD, high blood pressure, diabetes, etc.

What I knew before now was to avoid pork, processed foods, orange juice, and anything with a lot of seasoning. What I didn't know was to avoid foods that are often seen as "healthy". Those foods are healthy for some or even most people but not for me. Not for anyone else with CKD.. 

Don't just tell people that too much salt and sugar is bad for them. Tell them where to find salt and sugar in common foods. And try to be clearer about the yays and nays of daily nutrition. Especially when they are dealing with CKD or weight issues or heart issues.

Anyway.

I will be seeing a new nephrologist soon. The first thing I am going to ask for is to see a dietician. I think I mentioned that before. I don't know. Can't remember because I'm too hungry and stressed out. I believe I mentioned that I'm down to popcorn, toast, and coffee with rice milk at this point. 

Peace

--Free