Long Overdue Update

My fibro flare has been getting progressively worse through the last several months despite trying all sorts of things.  Here's a quick update:

1. The Bullet Journal tracker ended up being quite onerous to keep up with, and it wouldn't have mattered anyway since the GI doctor was not interested in seeing that level of data.  I've tried a few other trackers, like Habitica and SuperBetter, but honestly, I just find them to be a bit much.
2. My GI symptoms ended up being almost entirely due to a new allergy to soy.  I'm okay with soy lecithin in chocolate and some soy sauce (probably due to fermentation), but soybean oil and I really, really, really do not get along.  Things are now back to normal for the most part.
3. My husband and I both have gotten off of any kind of real diet plan due to our family's move over the winter holidays.  Too much take-out, too much junk food.  His weight, of course, has kept going down anyway, but mine has been bouncing up and a tiny bit down back and forth for a month.  I've been looking into Whole30, and it's very similar to Dr. Mullin's Phase 1, which worked for us.  At least, I can use the recipes.
4. I went back to physical therapy, and that was a dud.  The lead therapist kept talking over me and ignoring what I kept trying to tell her, and the water therapy started my tremors every time until the last time, which was the worst and took hours to recover from.  We agreed to end it because the PT seemed to be making my flare worse, not better.  The warm pool at my YMCA is closed for a massive rebuilding project, and I miss it.
5. Our new home is lovely, and it has become a real oasis for me.  I can't wait until spring when I can start working in the gardens and get the pool ready.  We even have a firepit, which I've wanted for years.
6. I've started volunteer teaching ESL for a half day on Thursdays, and I love it, though it's really getting my fibro upset every week.  I had missed teaching so very much, and writing lesson plans and working with students is feeding my soul.  If I could get my fibro more under control, that would help, though.

It's been a rough several months, what with worse pain, new symptoms, elimination diets, changes to my supplements, a huge move (after a seriously stressful house buying experience--everything that could go wrong did), and now the flu having gone through our family.  Hopefully, this rough start to 2018 means that the rest of the year will go more easily.

My New Symptom Tracker Using the Bullet Journal Method

Another spoonie in one of my online groups talked about how difficult it is to figure out what her triggers are other than weather, and I had to agree.  I've tried several tracking apps, all to no avail.  They take too long to set up, too long to use each day, and then there's the question of what they do with all that data.  I'd given up on tracking my pain (since it's daily) and other symptoms, but in reality, with some new symptoms, I need to figure out what those triggers are and have data for my doctors.

I got to thinking about the bullet journal method as a possible solution.  There are tons of videos on YouTube with all kinds of great ideas, and I'd looked into it before to use as a planner.  I've always been partial to paper planners, and I have a few that I really like, but honestly, they're heavy to carry around, and I have to carry it around for the planner to be effective.  In the end, I gave up on the bullet journal idea in favor of Google Calendar and lots of reminders on my phone and other devices.  The reminders are more helpful than writing it down was.

Yet, the bullet journal method could work for tracking symptoms just like some people say they use it to track their habits.  I use Habitica for working on habits and keeping track of some self-care items, and I use Trello for grocery and to-do lists, but what if I used a bullet journal just for my fibromyalgia and all its symptoms?

I watched a few different videos on YouTube after searching for "bullet journal for chronic illness," and I found some good ideas but not quite what I was looking for.  I decided to take the plunge and figure this out.  I went to OfficeMax, found a gridded composition book on sale for three dollars, found some stickers on sale, grabbed pens (also on sale--love back-to-school prices!), and decided to work it out.  I've added the pictures here; click on them to make them larger if needed.  I started with this plain composition notebook:

I added a label sticker to the front like this:

Bullet journals always start with a table of contents, so I put one in on the front page that includes all the sections:

For tracking my symptoms, I start with "month at a glance" in which I put all the basics on each day with a whole page for reflection at the end of the month.

 

Then, I have sections for tracking my symptoms more clearly.  The first section is for my pain with a line graph of my overall pain so my doctors can see that right away.

 
As you can see, I use colors to show where my pain is on any given day, blue for good, green for normal, red for bad.


The next section is for my GI symptoms and pain:

 
I use numbers for many of the symptoms, but for ones in terms of severity or number of servings of items I'm trying to cut down on, I use a ++, +, -, 0 system for ease of use.

After this, I decided the most important thing to track, mostly for myself, is my self-care.  I actually do a lot for self-care and am tired of med types telling me to do it or do more, but I also need reminders when I haven't been taking care of myself well enough.

 
For self-care, I just color in the box if I've done it, though I write in whether I took the nap in the morning (after the kids leave for school) or the afternoon.

I made a large section for research and ideas, mostly because I don't always remember where I read stuff and need to keep track of it better:

Lastly, at the very back, I put in an ideas board.  I saw that in one of the videos on the list, and it's a great idea.  She said she takes the sticky notes off when she completes that idea, so that's my plan, too.

Because I'll need sticky notes on the fly, I put in a clear envelope I had from somewhere, though any freezer Ziploc-style bag would do, and used washi tape to put it in.  The tape isn't strong enough for all the pens, but honestly, I don't plan on carrying this around a whole lot, filling it out every evening instead, so I have a dollar store bin I've put all the pens, washi tape, and extra stuff in, and have that available for when I fill out the journal.  The envelope is good for a few post-its, though.

One of the videos recommended using washi tape to color code sections of a bullet journal as well as mark the section dividers, so I did that, and I really like how easy it is to find the sections this way.  That's a good idea for a lot of things, so I'm hanging onto that one.

There are ways to make this cheaply or make it more expensive.  There were some very pricey gridded notebooks at the store today but I knew I'd need bigger squares to write in given my eyesight issues.  There are even more available online with even more stickers and ideas.

If you use a bullet journal to track your fibromyalgia or chronic illness, please put your ideas in the comments.  Let's all figure out better ways to track our data and communicate with our doctors together!

New Information Is Usually Helpful

For the last couple of weeks, I have had severe abdominal pain in a weird spot on my right side.  It can't be appendicitis due to that being gone for eleven years now, and my gallbladder tests all came back normal.  It's got my doctor and me stymied since test after test comes back normal.

The only thing my MRI shows that might be the problem is a lipomatous ileocecal valve.  I had no idea what that was, so I did some research and found that it's somewhat common and that a massage often helps with ileocecal valve issues.

The ileocecal valve is the muscle controlling flow between the small intestine and the large intestine.  If it gets stuck open for whatever reason (like fatty tissue infiltrating it), that can cause diarrhea, pain, and all sorts of problems.  If it gets stuck closed for whatever reason, that can cause constipation, pain, and all sorts of problems.  It's a rather important part of the GI tract, so I wish I had known about it earlier.

There are a few different ways to palpate and massage the valve closed (or open, whichever you need), and I have found a couple of them to be rather effective.  First of all, the pain has moved from that spot on my side more to where the valve is, which is odd.  The pain must have been referral pain or something.  Secondly, some of my other symptoms have slowed down and seem to be doing better.  Yesterday, as a quick test, I didn't do any massage after 1pm, and my symptoms went right back to where they had been.  So, massage several times a day it is!

I found this site to be beneficial.

I like this massage a bit better.

Not Enough Calories on GAPS Diet

While I like the idea of the GAPS diet, I was seriously under in my calories and then started having trouble with even wanting to eat (that much soup takes away my appetite, apparently).  While I need to lose weight, I can't do it that way, so I have real reservations about that diet if you follow it exactly as written.

My husband is finally getting to a point in which he is ready for a massive change, so I have been slowly getting us ready for the GBR Phase 1 diet.  I can't do the higher protein part of that, but I can do it with more carbs.  He and my stepson can do the higher protein part, so that's the goal.  The Heal Your Gut cookbook has some good recipes that are GBR Phase 1 compliant, so that will be a real help this time around, having more options.


In other news, I'm baking bread today, getting some pickles started, and starting the tomato sauce for canning.  The whole wheat sourdough is fun to bake, but the canning is a bit much today.

Well, that didn't work.

Diet plan update:

I've almost entirely given up pop (Pepsi, oh, how I miss you!), cut down on the acid most of the time only to find I still have bad heartburn, and have struggled to get the family to follow the diet plan.  It's a good one, but they are stubborn.  We still eat too much cheese and not enough veggies.  I've started baking my own whole wheat bread from sourdough starter, and everyone seems to like that.  I never fully implemented the Acid Watcher (AW) diet or the Gut Balance Revolution (GBR) diet, hoping the plan I came up with instead would help, but I've found that breaking bad dietary habits is a lot harder than I'd realized.

Some of my GI symptoms have gotten worse, though I'm closer to figuring out the worst triggers.  So, I've researched and found the GAPS diet.  It's a decent elimination diet, and I think it will help with getting this GI stuff under control.  I do not in any way endorse this diet as a cure for anything other than GI issues, and even then, you will have to tweak it to make it best for you.  It's a lot of work, not very fun, but I'm hopeful it will give my GI system a bit of a break, get things to calm down, and maybe even help with other issues.

Mini rant: The GAPS diet does not cure autism, and frankly, it offends me massively that anyone would think so.  Autism is a state of being, a natural way brains sometimes work, and there is no reason (or way) to "fix" or "cure" anyone who has it.  Our society is better off for having autistics in our lives, and anyone who tortures their child in order to "fix" or "cure" him or her is a disgusting abuser.  Yes, sometimes diet changes help with the sensitivity issues, and if that works for you or your loved one, that's great, but don't think it's any kind of cure.  Autistics don't need to be cured.  They are awesome the way they are.  This rant also applies to the many other mental health issues the diet proclaims to cure.  That's a bunch of bunk.

Considering this has been a rough summer for me health-wise and considering my stepson returns for the school year in three weeks, I've decided to go on the GAPS introduction diet for three weeks, and then we will all go on the Phase 1 of the Gut Balance Revolution diet right before school starts.  We still stay on that for the full first month, and then we will move to Phase 2.  It isn't optimal, but it's what we're going to have to do.  My stepson has come around to going back on the GBR diet, finally admitting that he felt better on it, and my son and daughter will have to go along, though I'm allowing them to cheat a bit, as their metabolisms are much higher, and they don't have any weight to lose.

This morning, I started with some packaged bone broth (Pacific makes a tasty one), but I cheated with 4 Ritz crackers.  That made me realize that I needed to get a pot of soup going on the stove, so I went to the garden, picked what I needed, and I have a veggie chicken soup going in the cast iron pot now.  That will be for lunch and probably dinner, too.  I also have chicken to get in the pressure cooker, but that will be in a bit.  I have to plan out the rest of the week, as I'm taking at least five days per phase in the GAPS diet to give my system the break it needs.  The kids are at their other parents' houses this week, so my husband and I are doing this hardest part this week.  He'll be eating more normally the rest of the day, just going along with the soups for dinner.

We will see how this goes, but honestly, I'm desperate to get my GI system evened out.  I'm using the Heal Your Gut Cookbook for ideas and recipes, and I'm hopeful it can help for these three weeks, and that should make the transition to the GBR Phase 1 diet much easier.

Diet Fallout: New Plan, New Issues

As a follow-up to the chronic illness diets comparison, I have put together a diet plan for my family, starting this summer and continuing from then on.  The plan emphasizes what all the diets agreed on, as well as more exercise than we usually do in the summer.  The plan goes as follows:

Basic Rules:

1. No pop.  We’re going to wean off of this, but root beer, Sprite, Pepsi, all of them are not healthy for us.  The occasional drink isn’t a huge problem for the most part, but that means it can’t be daily.
2. No added sugar.  No high fructose corn syrup, no sugar, no fake sugars.  Again, the occasional dessert isn’t a huge problem, but we eat way too much sugar.
1. Allowed sugars (in moderation): Maple syrup, maple syrup powder, agave syrup, honey, coconut sugar
3. No caffeine.  Coffee, tea, and hot chocolate are allowed in the morning, but not the fancy sugary dessert drinks, and moderation is key.  A little bit of natural sugar is fine, as is almond milk, but that’s it.  
4. No dairy except for a few items.  Hard cheeses are allowed (romano, sharp cheddar, manchego) in small amounts.  Yogurt and kefir are allowed.  Ice cream is not.
5. A pound of fresh vegetables a day.  This is our goal for each of us, which is part of why we’ve planted so much this year in the garden.  Between snacks, lunch, and dinner, this is easier to get to than we think, and variety is key.  No more avoiding veggies at dinner!
6. Half a pound of low-glycemic fruits a day.  We have to be careful not to eat too much fruit in one sitting due to blood sugar levels.  Blueberries are perfect, and we’ll be picking them this year.  Other Michigan fruits in season will be fine, and we will be putting up what we can.  
7. No white flour or processed foods.  We’re going to be working on getting to this, but the goal is whole wheat, whole grains, not processed stuff.  The few exceptions to this will be pasta (which we’ll be limiting to just a couple times a week) and what we already have in the pantry and need to eat.  
8. Lean protein at every meal and snack.  If you’re eating an apple, eat it with almond butter or yogurt as a dip.  A cup of blueberries goes great with a handful of mixed nuts.  Every meal and every snack.  We will also be doing protein shakes/smoothies once a day some of the time to help get more protein.
9. One liter of water a day--or more.  Two cups before meals to help with digestion is the goal, but everyone will have to drink more water.
10. Exercise every day.  We will be going to the YMCA at least twice a week this summer, but we have exercise options available at home, too.  Everyone will be finding a preferred exercise method (bikes will get fixed, shoes for walking already exist, and if you need something special, ask) and using it every day.  If you want to try something new, just ask.

Addendum 1: These rules are for a healthier life, and it would be best to follow them at other homes, friends’ houses, etc.  The more you cheat on this diet, the harder it will be to get and stay healthier.  That said, we cannot control what you eat elsewhere, and if you decide to cheat on this diet, just know that you will have to start right back up again when back in our home.

Addendum 2: Everyone will be expected to work in the gardens this year and to help put up the various fruits and veggies.  That means watering, weeding, going to the farmhouse and working there, picking, canning, freezing, etc.  No exceptions except for illness, band camp, golf tournaments, or required practices.  This work is part of your regular chores.

Addendum 3: If you aren’t sure if you can eat something, read this list first, and then ask.  When in doubt, grab some fresh veggies or fruits.

This list will be posted on the fridge after we go through it with the kids, and this is the goal for the summer. I'm expecting a weaning period for caffeine (except for my husband, who is allowed his coffee) and some issues with birthday parties, etc. Overall, this should work for all of us.

For me personally, I have started following the Acid Watcher Diet (with some stuff from the Gut Balance Revolution diet) starting today (though I have weaned myself down from caffeine with still some iced tea daily). My goal isn't to lose weight at this point but, instead, to get my gut issues to stop. My doctor is starting to wonder if I have celiac disease, so I've been referred to a GI, and I have labs to get done. Of course. Anyway, I'm hoping that following the stricter AW/GBR diet will help get some symptoms under control and fix whatever the problem is. Infections have been ruled out, so now it's just my body reacting to something. I'm hopeful that a diet change will help.

Stop Selling Us False Cures!!

If you have spent much time online searching for information about your chronic disease (mine being fibromyalgia, but I have a few others that I search on, too), you will run into ads for this, that, and some other thing trying to sell you a "cure" or "treatment" that will solve all your problems.

These "cures" (that aren't--most chronic diseases don't have good treatments or cures, which is why they're chronic) can be as simple as books and as complicated as supplement systems or mechanical devices.  The ones selling these products know that we're suffering and that our suffering makes us desperate, especially late at night when the painsomnia is horrible, and their marketing skills are amazing.

Just look at the #Fibromyalgia posts on Twitter.  People selling books, yoga programs, supplements, more supplements, big Pharma drugs, devices for pain, more devices for pain, studies, and so much more.  For those of us really suffering from the pain, it all can feel overwhelming.  We're easy marks, really, but we have to be careful of those snake oil salesmen.

What really gets me is when I see the national groups joining in to sell us stuff.  I'm all for awareness, so I have my purple ribbon, shirts, and water bottle, but honestly, how much crap am I expected to buy?  Sell me a book that sells a product or program, and yeah, I'm going to be grumpy.

So here's my request: Stop selling us stuff!  My chronic disease should not be for your profit.  Help us instead to create safe, supportive communities locally and online, and let's use that money for research, not for someone's bottom line.