Chitosan & This CKD

 Recently, I made a post about being careful of supplements. Most of us with a chronic disease will often feel desperate enough to try every new treatment or supplement we hear about. Ironically, before and after I was writing that post, I heard of a new one.

Chitosan is:

"a natural polycationic linear polysaccharide derived from chitin" (source)

Chitin is (according to the same source):

"Chitin is the structural element in the exoskeleton of insects, crustaceans (mainly shrimps and crabs)..." 

What got me interested in chitosan was hearing from someone that it's supposed to be good for kidney health. Of course, I then did a search and read that it might have a "beneficial effect on renal function". According to a clinical trial, 

"Significant reductions in urea and creatinine levels in serum were observed after 4 weeks of chitosan ingestion. The feeling of physical strength, the appetite and the sleep of patients in the treatment group had improved significantly after 12 weeks of ingestion, compared with those of patients in the control group. During the treatment period, no clinically problematic symptoms were observed. These data suggest that chitosan might be effective treatment for renal failure patients, although the mechanism of the effect should be investigated further." (source) [my emphasis]

 NOTE: Keep in mind that I have no medical training. Do not rely on my laymen's research. Only get medical advice from professionals. That said, I myself am a sarcoidosis and CKD patient. It took me several days to find and even attempt to understand what I was reading during this info search. It's a shame that I (as a patient) have to even do this kind of research but my mantra is to be my own advocate. That's a real problem sometimes due to my cognitive issues but such is the current health care system.

(Source)
The 3 I love

Barring any serious problems with lab tests, I see my nephrologist around every 3.5 months and I get labs with my Remicade infusions every 7 weeks. I was in between these appointments when I heard about chitosan and decided to try it for at least a couple of weeks.

When I looked for a chitosan supplement, I noticed that most of them include as much as 500mg of chromium, 200mg of calcium, and 150-200mg of phosphorous. I know that I'm not to take any additional calcium and phosphorous (I keep a list of things my doctor has warned me about) so I found a brand that didn't include those two things. That was tricky but I found one that was fairly affordable to boot.

Reading reviews from several sources, I got the impression that the brand I was going to try either did nothing for the user or - and this is horrifying - caused bloating and constipation. Apparently, it only took most users a couple of days to experience the bloating and constipation. Users who had little or no results based on labs realized the lack of effect within 1 to 2 months of use.

Okay then.

I decided that I would try the supplement for at least 2 weeks. I would be having infusion labs done within a week and a half of starting. Of course, I'd stop if I had any of the more uncomfortable side effects. 

(source)

The capsules are the standard size for filled gelatin caps. There is a very slight fishy taste to the capsules if let them melt the least little bit on my tongue. The odor didn't last and I had no aftertaste (or smell) from them.

The suggested use of the brand I have is to "take 3 capsules immediately before the two main meals of the day", not to exceed 6 capsules per day. The capsules are to be taken at least 4 hours before or after taking any fat-soluble vitamins (which are vitamins A, D, E, and K). I learned that there is a reason for that and it leads to why most non-CKD people take the supplement.

Chitosan blocks dietary fat absorbtion.

Ahh...

The thing is, while I am hoping that the chitosan will help with my CKD, I wouldn't count on it for weight loss. According to this:

"Analyses involving all trials indicated that chitosan preparations result in a small but statistically significant greater reduction in body weight..." (my emphasis)

(source)

So, yeah. I don't remember from reading all those reviews that I waded through whether or not people had weight loss success with the supplement.

The good news for me is that, after 3 days of taking these capsules, I have not had any problems with bloating or constipation. I suffer from chronic constipation and I got some relief from it. Go figure.

When I have my labs done and meet with the nephrologist, I will be able to do an update on how this is all going. It might be that the doctor has me stop taking the supplement. Maybe there won't be any "Significant reductions in urea and creatinine levels" but I can hope, can't I?

Peace

--Free

Be Careful of Supplements & Remedies

 Sometimes, like most people with chronic illnesses, I get to feeling a little desperate about my health. I'll think that there must be something to help my kidneys heal or that I should be able to find something to help fight back against the effects of sarcoidosis. In addition to those things and battling depression, and getting older, I struggle to maintain a healthy weight. So I will often go searching out something - anything - to help with all of that. (I've even thought briefly of going back to smoking just to lose a few pounds.) And, then, every now and then, I get a reminder to be careful.

The other day, I saw this news headline: "Congressman’s Wife Died After Taking Herbal Remedy Marketed for Diabetes and Weight Loss".

Hold up. Hold up. What?

Yeah. Go read the entire article. In summary, she:

died from dehydration due to gastroenteritis — an inflammation of the stomach and intestines — that was caused by “adverse effects of white mulberry leaf ingestion,” according to a report from the Sacramento County coroner...

She was my age and, from photos, she appeared to be in much better physical shape than I am. 

It's very easy to get hopeful about finding a supplement or treatment that can help us look and feel better. Not many months ago, I actually bought a bottle of collagen peptides because I'd heard they could be useful for weight loss. And, of course, I'd also heard so much about the other benefits of collagen being good for skin, bones, muscles, hair, etc. Sounds great, right? I thought so until I realized that excessive intake can cause oxalate deposits. I try to limit foods and supplements high in oxalates. I even refer to a list of certain foods to monitor in order to protect my kidney function. There is one list I keep in my OneNote folder. But I was hyped about that collagen...

I got the same kind of hyped when I heard about Chitosan supplements. Chitosan is said to be possibly beneficial for lowering creatinine. Yeah, yeah, yeah. The thing is, I had trouble trying to find one without added calcium and phosphorous. When I did find one, the reviews from CKD sufferers were not encouraging. Some said their creatinine only went down by tiny amounts after weeks of taking a supplement. Some said that they couldn't deal with the side effect of terrible constipation after just a matter of days. So that is something I am going to have to talk about with my specialist. I think that this is the kind of supplement that I will want as a prescription. Too many supplements are not well-regulated if they are regulated at all. And we are talking about my kidneys here...

I'm not saying that every supplement is bad. For my own personal health, I do try to be careful of knowing as much as I can about any supplement. I always check with my GP, rheumatologist, and nephrologist before I get excited about any vitamin, supplement, or other "remedy".

Just understanding the nutrients, vitamins, and minerals in my basic food diet is complicated. When it comes to adding supplements, things can get really tricky.

Talk to your doctor or treatment team about adding anything - even vitamins - to your routine. I was taking a multivitamin for a few years and my doctor recently had me switch to a different kind. At this time, I don't need the excess iron that I was getting in this particular vitamin. Thankfully, I have an attentive medical care team watching my lab reports and they were paying attention as things were changing but they only know about the vitamins and supplements that I tell them about. So, I'm sure to add anything new.

These are the other lists on the same page such as...

After reading about this woman's death, I am even more determined to deal with my health more carefully. Sure, I still want to lose 20 pounds (I'm lying, y'all, I want to lose a lot more than that!) but I will be relying on exercise and willpower.

By the way, I still love and rely heavily on FREE resources such as the Cronometer app. I stepped back from the paid version but the free one is still a favorite. I use it daily. If you can afford to, the paid version is great and I like to donate to the project when I can.

There are a LOT more details than shown here

Be safe, be sensible, and don't give in to quick-fix trends. 

Peace

--Free

 It's been a while since I have posted here - or on any of my blogs. I am dealing with some depression stronger than usual. 

I wanted to do a little update to apologize and say that I will be back posting when things get better. In the meantime, here is a little humor to brighten y'alls day.

And this one to remind you of something important: And the most important thing of all: I remind myself every day that God's got this. 

And the most important thing: 

Even if the disease(s) kills me, my soul is already safe. 

Peace

--Free

**All images are from a basic search & I own no copyrights**

*MEAL IDEA* Homemade Pizza (mini)

 Had a pizza craving so here is how I sated it:

879 calories

These are the ingredients:

The Mama Cozzi mini crust came with a packet of sauce so I didn't add any. I just mixed the sauce into my browned beer crumbles. 

The Minerals - which is what I focus on

I worry more about minerals than I do about calories. I've been losing weight on this self-modified renal diet so...

And, yes, this went through half my daily allowance of sodium but I wasn't hungry for anything else until later in the day. I had some toasted French bread with oil, garlic, and a tiny bit of parmesan. For my evening snack, I had an ice cream sandwich.

I just wanted to share that for anyone who gets a pizza craving but doesn't want to do a lot of cooking.

Peace

--Free

**UPDATE** This Renal Diet Is Messing With My Facial Skin

**UPDATE** I figured out that the cause of my skin issue was not the overall renal diet but the cashew milk I was drinking. I can only drink it in small amounts. I switched to macadamia milk but I like the cashew more! I now switch back and forth - depending on price - and just am careful about amounts. Amazon has both types in their Subscribe and Save program. This is the macadamia milk I use and this is the cashew milk. I can also find this Silk brand of cashew milk in local stores.

 Um, why did none of my doctors warn me that a renal diet can mess with my skin?

As my body is falling apart on the inside from the sarcoidosis and meds, I have managed to maintain my skin. My parents may have passed me some problem genes but the skin genes are awesome. Until the past couple of weeks.

Normally, I don't need to use anything on my face but a mild oil-based cleanser and some German-made Nivea, L'Oreal Age Renew, or some of that amazing Moistfull Collagen Cream from Etude. Sometimes, I use nothing but some water and oil.

Normally, I said.

For the past few days, I have been making masks of flour or oatmeal or turmeric and honey to calm down the skin on my face. I keep a bottle of water in the freezer so that I can cool down the irritated areas.

There is no visible breakout but my face just feels irritated. When I asked around about why this could be, an acquaintance who knows a little something about skincare told me to think about any changes in lifestyle or diet. Now I would love to be able to say the problem is due to the walks I've been taking, but... Nope. I thought back over everything and it has to be my diet. Right?

Well, after doing some Googling, I think I might be on to something.

I know that I am not getting enough oil in my diet - olive, coconut, ghee - and I sure as hell haven't been eating enough vegetables. That stops today.

Of course, CKD can affect the skin, but I've had CKD for a while and my skin was fine until made such drastic diet changes. In my quest to take the best care ever of my kidneys, I think I may have gone overboard. I haven't just cut back on vegetables and beans and dairy - I've cut all that out like I'm scared of it.

Anyway, I need to check with the Reddit group to see if anyone else has noticed this kind of problem. And I need to go to InstaCart with a quickness and order some skin-rescue food. 

Thank Jesus I hate wasting food and still have some beans - pinto, lentils, and black beans - in the pantry somewhere. Now I need to order some green stuff with leaves and some tuna and anything with that I can sprinkle turmeric and other antioxidants on.

My health problems are going to run me into the poorhouse. It's not time for a grocery order yet (according to that joke that I call a "budget") but desperate times and all that...

So I am going to let this oatmeal-water-olive oil paste do its thing while I say a prayer over my credit cards and put in this grocery order. I'll follow up at some point about how my rescue plan is working out.

God forgive my vanity but, if I have to feel like crap, I want to look good doing it.

Peace

--Free

That Sparkling Juice From Aldi’s…

I know I have issues when something as simple as a beverage can cheer me up. Tonight, I ordered groceries from Aldi's just so I could get this deliciousness. 

Aldis Nature's Nectar
Sparkling Juices

I love this stuff so much that I want to dedicate this song to it.

Doesn't take much at all to make me happy. 

I tried this sparkling juice just once before and it was so yummy. The problem is, everyone else loves it as much as I do so it tends to sell out about 2 minutes after it hits the shelves. It's been on Instacart a few times since that first time but by the time I see it, every can is absolute ghost.

Tonight, I was in luck. I saw the juice while browsing Instacart for some pasta sauce and a few other groceries that I was only thinking about buying. Hah. I immediately threw together an order with that juice at the top of the list. When one of my favorite Instacart shoppers texted to say Aldis not only had that flavor but a bunch of variations, I told him to just grab what he could. 

The best thing about this juice is that it is not too CKD-unfriendly. As long as you don't go overboard... According to Cronometer, when I checked the minerals for one can...

(minerals) Nature's Nectar

Because the drinks are sweet, I find that I can drink half of one and save the rest for later. My sweet tooth has abated a lot in the past few years. Sometimes, I will empty the second half of the can into a glass of San Pellegrino - my other favorite drink when I'm craving bubbles and fizz.

(minerals) San Pellegrino plain

One can every four or five days is plenty. I haven't had soda pop in years and don't know how I ever drank so much Dr. Pepper and Coke. There are times though when I want something flavorful and bubbly. This juice hits the spot. It's sweet but not sickenly so. It's bubbly without having that irritating burn of some carbonated drinks.

Ever since my last thrilling doctor's appointment, I have had no trouble sticking to this eating regimen. It's keeping me healthy but, as the doctor reminded me, I can lighten up every now and then. She approved of my coffee drinks with the macadamia milk and she loves the Cronometer app that helps keep me on track.

Tonight, I am going to break my nothing-but-water-after-7 rule and have one of these drinks. I might even have a piece of cheese toast to go with it.

Peace

--Free

P.S.: By the way, when I couldn't find this particular juice a long while back, I looked for alternatives. I made the HUGE mistake of trying that over-hyped WTRMLN drink. All I can say about that is that it's great but only if you like the taste of rank watermelon rind water.

UPDATE **CROSS POST** Meal Prep Is Not for Sissies

UPDATE - I took another swing at meal prep. See below for the photo.

**Posted this at FreeBeingFree the other day and it probably belongs here** 

I'm not playing when I tell you that meal prepping nearly broke my soul. Talk about being a meal prep dropout. I didn't even make it past cooking more than one part of a meal...

This was my first time seriously attempting to put together 5 days' worth of meals. People, I did not make it. I just couldn't. I did manage to set up 5 separate servings of pasta and get the seasonings for each meal measured out. And that wore me out.

Not my kitchen, but...

This kitchen looks CLEAN compared to my own!

What I intended to do was put together a pasta meal for every night of the week. Sounds good, right? How hard could it be? That's what I thought.

Five minutes after I'd finished measuring and weighing the pasta and bagging the seasonings, I scrapped that plan. My next idea was to just do the pasta, the seasonings, and a protein for each night. Then the idea of weighing and cooking and sealing 5 separate proteins started to depress me.

In the end, I kept the 5 separate bowls of pasta and bags of seasonings and wrote out a menu plan for the rest - I'm not sure I should call it a "menu. It looks like this:  

• Day 1 pasta bowl with sauce + (circle one): chicken, beef, pork, tofu + (circle one): cheese bread, garlic bread, buttered bread, other.
• Day 2 pasta bowl with (circle one): fettuccine sauce, marinara sauce, red sauce with garlic and onions.
• Day 3 pasta bowl with (circle one): fettuccine sauce and broccoli.
• Day 4 See Day 1
• Day 5 pasta bowl drizzled with warmed garlic-seasoned olive oil + (circle one) cheese bread, garlic bread, buttered bread, other.

I also worked out my sodium, potassium, and phosphorus totals for each of those meals. That way I could decide how to work in (or not) any desserts, snacks, or beverages without going over.

So, basically, I cooked and separated some pasta and seasonings, then wrote up everything I didn't prep. Oh, and I looked at funny memes about meal prepping.

This looks good to me...

My niece is a meal-prep pro. Every Sunday, she sets out all her meals for the next week. Complete meals. This is a screenshot from my phone of her actual meal prep from a couple of weeks ago.

I have no idea how she does it but she even manages to hold conversations over the phone with me most of the time. She warned me that it takes practice and stamina, and maybe a glass or two of wine. Maybe I need to start drinking wine then?

The worst thing is that my kitchen looks like a disaster area. You'd think I had prepped meals for a unit of soldiers or a boarding school cafeteria. How did that happen? I didn't actually prep any of the sauces or proteins. I didn't even separate and label the bread. 

In my defense... Unlike my niece, I can't just prep the meals and call it good. I have to enter everything into my Cronometer app. I love that thing but they need to do something to help my ignorant behind deal with the metric-to-imperial measurements. 

(Side note: I need prayer. I have a HUGE crush on this Christian astrophysicist. I get a serious headache trying to follow most of his seminars but, Lord help me, he looks so handsome. There is something about being that smart and Christian that is so, so attractive...)

Anyway.

Why didn't I ever learn the metric system? Why? It's one of those things I swore I'd never have to use (I didn't cook when I lived in England so...) but now I am dealing with recipes and nutrition labels.

And why are some nutrition labels so funky? I will see something in ml or grams when I was raised to measure by ounces. I dang near had to do college-level research when I was trying to figure out the grams for 2/3 cup of a pasta sauce. I had to work way too hard to get that right. Because, of course, 2/3 cup (or any amount) can depend on the type of ingredient being measured.

Good mercy.

I was joking to my SIL that I've gotten so good in the past few weeks at eye-balling measurements in grams and ounces that I'd make a great drug dealer. (I'm lying. I would get killed because I mismeasured something!)

So, yeah. I now have 5 partially prepped meals for next week but my kitchen is so wrecked I don't want to be in there. I will have to let you guys know how it goes next Sunday when I try this "one more again".

Peace

--Free

I think I'm getting the hang of this...

Not only did I weigh and measure every single thing but I also put all of it in the Cronometer app. All I will need to do to track meals - for 5 days anyway - is select the item and hit the time stamp. Oh, and I will have to add any bread or desserts. I'm pleased to have gotten this done without totally destroying my kitchen. Now I'm too tired to chew so I'm going to take a nap.