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.

Living with Fibromyalgia Pain: Coping Methods

I have been in pain for the last few months, more than usual, as the weather changes and an infection have been taking their toll.  Considering I cannot take any pain killers, the pain makes things difficult.  Some days, I don't have much energy since so much of my energy goes toward dealing with pain, but others, I'm able to deal with the pain just enough.

The first key coping method is ignoring the pain.  I have years of experience in doing this.  It's amazing how much pain you can ignore, especially when you have something more important to focus on.  In my experience, we can ignore even very high levels of pain in short bursts.  Our kids need us, the pot is boiling over, our significant others call us from the other room, we need to get ready quickly for an important event, or something equally significant and short--any reason to set aside the pain in our minds, compartmentalize and wall off the pain for a short time, can be used to mute the pain for a little while.  When pain levels are low, we can do it for longer, but when pain levels are high, we can only do it in short bursts.

The second key coping method is spacing things out during the day.  If you know you have a lot of different things to get done that will take a lot of energy, space them out as best you can.  Waiting until later in the day and then doing everything all at once will only make the pain worse the rest of the day and into the night.  This lesson is one I'm still learning, especially when mornings are so difficult, but if I put about an hour or so in between errands or taking the kids hither and yon, it helps keep the pain to a lower level.

The third key coping method is self-care.  My pain is always worse when I don't eat, let alone when I don't eat right, and then don't take my supplements and medications.  My pain level goes up with less sleep or worse sleep or both.  While a shower might be beyond me some days, a hot bath with Epsom salts can make me able to drive, so putting it off just makes things worse.  When I stop taking care of myself, the pain is always worse, so sticking to a routine and making sure to eat, take my pills, bathe, sleep as well as possible can help keep the pain at a more manageable level.

Lastly, the most important coping method is rest.  On really bad pain days, I have to make myself rest.  I can do myofascial release, yoga, hot baths, take all the right pills and eat well, and if I don't rest, the pain will make sure I do sooner rather than later.  Resting with my feet up, knitting, sleeping, reading, resting of any kind helps.  As Dr. Liptan says, in fibromyalgia, our bodies are in a constant state of fight-or-flight, and only rest can really trigger the rest-and-release state we so desperately need.

Of course I use other coping methods: tai chi and yoga (depends on my mood that day and my pain level), meditation and prayer, walking, gardening to be outside, various supplements, water exercises, and more.  Thing is, they don't all work all the time on my pain.  Using the key strategies and then trying these others until finding what works that day are really the only ways I have for dealing with my pain.

What methods do you use?

Small Rant: Emergency Room Adventure

I've been fighting some sort of virus for over a week now.  I thought it was just a bad fibro flare but yesterday had to admit that dehydration was also likely.  My doctor told me to go to the ER for an evaluation for dehydration earlier in the week if I got worse, so I finally listened to him yesterday.

The good news is that my kidney is fine and that I wasn't too dehydrated.  I guess my fibromyalgia really hates dehydration.  Anyway, some labs and fluids added up to being sent home with the admonition to call my doctor Tuesday if I'm still fighting this dang thing.

Here's the rant: why don't nurses listen to me when it comes to IV sticks?  I've had a ton of IVs in my life so far (seriously have lost count), and I have learned that A) I'm not an easy stick on a good day and a really hard one when I'm sick and B) if the nurse has to root around after putting the needle in, that IV is not going to work.

So, I make sure to tell the nurses these two truths every time, and every time, they ignore me.  They assure me that they can get the needle in, that they're really good at it, and when they don't get it just right, they root around with the needle trying to make it work.  Every time.  I had three nurses yesterday, and only the third listened to me at all after her first try failed exactly how I said it would.

Meanwhile, the pain from the sticks made me have some of the worst tremors I've had in awhile and definitely freaked two of the nurses out.  Thank goodness, my mom was there to explain that the tremors were my body's reaction to the pain and that it meant the pain levels were really high.  I asked for the ultrasound to find the vein three times, all to no avail.

It's my body, and I know it pretty well.  If they've never treated me before, how does their experience override mine?  Nurses, doctors, medical providers, please, please, please listen to patients.  We know our bodies, and we are trying to help you help us.

If anyone can tell me why medical provider types don't listen to me about this simple thing, please put it in the comments.  I'd love to get some answers.

Fibromyalgia Diet Comparisons (with a spreadsheet!)

If you're like me, you've been bombarded with recommendations for this diet or that diet.  Just read this book, do everything the author says, and you'll lose weight, have less no pain, even be cured!  There are the paleo people, the vegetarians, the vegans, the Whole 30 types, and more.  Honestly, it's all a bit overwhelming.

So, I ended up comparing and contrasting a few different diet plans that have been recommended to me either through fibro resources, doctors, or friends.  I have been trying to follow Dr. David Brady's very high protein Fibro Fix 21 day diet (which I had to stop due to bladder pain), but last summer, my husband and I were actually somewhat successful on the Gut Balance Revolution diet, so that made me wonder what diet would be best to follow.  Yet another friend recommended the Acid Watcher diet, and since my GERD is so very bad, I had to get that book to see what the recommendations were.  Of course, I wanted Dr. Liptan's input from her book, The Fibro Manual, to round it out.

These diets are all created/promoted by doctors in an effort to help patients.  Paleo and the others are more about lifestyle or losing weight, but for fibromyalgia, we have some special issues that make following a medically-based diet more important.

Here's the full spreadsheet.

Analysis:
Everyone agreed on some common goals.  These are all heavily research-based and very hard to argue against.  Everyone agreed on:

No:

• Sodas, pop
• Sugars, especially artificial sweeteners and HFCS
• Caffeine (though some moderate that with allowing some coffee, tea)
• Fatty protein sources, especially fatty red meat
• Processed foods with lots of hidden sugars and ingredients

Yes:

• Fresh, unprocessed foods, preferably organic
• High protein, especially lean protein
• High fiber
• Lots of filtered/purified water, at least a liter a day
• Probiotics, preferably in real foods like kefir
• More vegetables and fruits, though lower in sugar preferred

The Fibro Fix diet is the most restrictive and the highest in protein.  Honestly, I think it would work for most fibro types.  I just have kidney/bladder issues that make my situation more complicated.  Dr. David Brady is also the only one selling his own supplements and shake powders.  Honestly, compared to the other doctors, in their practices and just promoting their books, he stands out, but also, his book has a lot of research behind it and some very good points in figuring out if one really has fibro or not.  I still recommend the book.

The Fibro Manual does not promote any specific diet, though Dr. Liptan does recommend cutting some big things and following an anti-inflammatory diet.  It sounds like she tends to make it more personalized in her practice, but she agreed with the others on the big areas.

The Acid Watcher Diet makes a strong case for lowering dietary acid big-time in an effort to heal the body from acid reflux and throatburn.  Honestly, I found his arguments highly convincing, and now I'm thinking I need a scoping since I haven't had one for 9 years with worsening symptoms in the meantime.  If your worst symptoms are having trouble swallowing, sore throat, acid reflux, and pain, I would recommend his book, hands-down.  He also has a great set of meal plans and recipes to make it easier.

Side note: If I'm understanding the Acid Watcher diet right, the most likely source of my bladder pain from the Fibro Fix diet is the higher dietary acid involved in making two high protein/high fiber shakes palatable and then eating similar-to-usual dinners with usual acid sources.  Something to think about.

The Gut Balance Revolution really is a must-read for everyone with any sort of health problems.  Dr. Mullin's three phase diet (I only covered 1 and 2 due to those being the ones needed to get started) is based on the latest research on our gut biomes.  The first phase is the most restrictive and hardest to follow, but it's only a month, and it's to get the bad bugs in the gut to die off.  The second phase is designed to re-seed the gut with beneficial flora, and honestly, it isn't all that different from the Acid Watcher diet, especially in each diet's phase 2.

In the end, everyone agrees that there is no one diet for anyone.  We are all individuals, and fibro peeps are the most individual there are.  The best thing is to read through these books and other options, know your body and your fibro, and try a dietary change to see if it works.  Dr. Liptan argues that it really takes 2 months at least to know if a dietary change really works, and the others agree.  Their one month-ish first phases are more focused on resetting things, something I think most of us with fibro can see the attraction of.

At this point, I will be combining some things from the various diets to create one that will work for me and my husband, hopefully our kids, too.  Let me know what you try and how it works out!

I Ran into a Snag

I only have the one kidney due to a tumor ten years ago (long story--probably part of how my fibromyalgia started), which means that my doctor likes to do kidney function tests every once in awhile, just to make sure it's still okay.  The tests a couple of weeks back showed I have a UTI, which was weird because I didn't recognize it from symptoms.  Then again, I often have UTI symptoms (why two urologists thought I had interstitial cystitis), so I ignore them until they become bigger, more real.

Anyway, I got on the Cipro that tends to work (they use the stronger stuff to protect my kidney), started this 21 day diet, and thought nothing of it other than how to make sure I had plenty of time before and after taking my antibiotic with no calcium (it makes Cipro not work).

Yesterday, I got severe pain, the kind I hadn't had in ages.  Take my breath away level pain.  I figured that meant the antibiotic wasn't working and messaged my doctor.  He told me to stop the antibiotic, see if the pain went away, and if I stayed symptomatic, to let my Ob/Gyn know since it's more her area.  No biggie, but then I got to thinking: what if it's the shakes?

Turns out, protein shakes can cause urinary pain.  This is probably why Dr. Brady says to drink half our weight in ounces of water daily, which I'd been coming close to doing for days.  The pain yesterday started not long after my breakfast shake and was bad enough I didn't eat much the rest of the day, though my weight stayed the same.

So, I'm taking a few days off of the Fibro Fix 21 Day Challenge, taking it easy on everything, babying my bladder and kidney with lots of water, asparagus, and my usual supplements (and probiotics, definitely!).  If the pain goes away, that was it.  If it doesn't, then I'll get another urine test to see what's going on.

Fibro Fix 21 Day Challenge: Day 6

I have learned some things already this week:

1) The shakes are definitely doing something to my GI system.  Gas, pain, way too much time in the bathroom, etc. all make me think that the shakes with all those greens are doing something to my system.  Honestly, I am not sure my body is absorbing much of the greens from what I'm seeing and dealing with, which makes me wonder why I'm adding that greens powder to my shakes, wonder what the point is.  Dr. Brady says it's to detox, but I'm not sure that's what's really going on at this point.

2) Banana, frozen fruit, cocoa powder all help make the shakes taste better.  Biggest thing, though, is ice.  They're easier to drink if they're really cold.

3) Getting one of the Blender Bottles with the mixer ball was totally worth it.  One of the problems with these shakes (never having done it before) is that they separate, don't stay homogenized.  If I take too long to drink it, set it down because I'm dealing with something and then come back to it, having that mixer ball in there to blend it back together really helps.  Worth the money.

The Blender Bottles we got also have containers that screw on to the bottom, one of which holds pills.  So helpful!  They hold blueberries, nuts, the powder mix, whatever.  I remember having something similar for the kids when they were little and how helpful it was in the car.  Same thing for adults!  The bottle is only 16 ounces, though, or I'd use it as my main water bottle.  They wash up easily, dry easily, and don't seem to hang onto flavors or smells.

4) If I'm going out at all, I need to plan better with the shakes.  I keep getting caught out running errands or whatever during lunch time or out with Mom, and then I end up eating something I shouldn't or eat my main meal then and then want to eat with my family.  One shake a day is easy, but two shakes are harder to fit in.

5) I really do need to stop doing that much gluten.  I ate more bread yesterday, and my weight went up.  I think Dr. Brady and Dr. Mullin are on to something there.  It doesn't do anything to my pain levels, but it sure does to my weight.  I need to cut down further.

So far, my GI system is starting to mostly stabilize, my pain is better due to weather stabilizing a bit, and I'm sleeping better with more GABA at night.  We'll see how it continues.

Fibro Fix 21 Day Challenge: Day 3 Report

Today has been a challenging one.  I woke up with severe pain today, most likely due to the rain, and the brain fog and dizziness were worse than usual.  I wasn't sure I would be able to stick to the diet at all today.  The good news is that I managed to stick to most of it.

First things first: the shakes are better with banana!  Thank goodness I got some bananas at Costco yesterday.  Almond milk and bananas with something else for flavor, like cocoa or frozen berries, are perfect.  I can definitely drink these now.  For the morning one, I added a bit of cocoa, a bit of peanut butter, and half a banana, and it was good!  For the afternoon one, I added half a banana and some frozen berries, and it was good, too, so I have solved that dilemma.

Next, symptoms so far: my husband and I are definitely having GI stuff going on.  It is really uncomfortable, but it will probably pass soon.  At least, I hope it does.  Dr. Brady does call this a detoxifying program, so maybe that's what is happening.  When we did Phase 1 of the Gut Balance Revolution diet last summer, we had some GI stuff but not like this.  That said, this program is similar enough that it might be helping us re-do the gut biome.  It did resolve eventually, so this should, too.

Now we're trying to figure out how to make sure we get both shakes in each day.  The snacks and dinner are easy enough, as is the first shake of the day, but it's the second one that's tricky.  If I do the first shake later in the morning due to not being able to get up and around, I'm not interested in the second shake until later in the afternoon, which then makes dinner a bit of an issue.

So far, fibro pain is worse, though that isn't necessarily due to the diet change, what with all the weather changes lately, and GI issues are worse, though he warns of that in the book and says it will resolve.

Fibro Fix 21 Day Challenge Day 2 Report

Day 2:

I started out the day with Dr. Brady's Morning Brew with a twist, cinnamon instead of chili powder, and it really did help me wake up better.  I will keep doing this every day.  The hot water, lemon, and cinnamon really help me wake up.

We were out of almond milk, so I used Happy Tree Original Maple Water with the shake mix and a dollop of hot chocolate mix.  I managed to get it down, but seriously, the greens mix makes the shake taste nasty on its own without flavor to help.  The taste stayed in my mouth all day.

I had lunch out with my mom, so I just got a small lunch (salad and one baked chicken thigh).  I had a snack later, but by the time of dinner, I still could taste that shake flavor and ended up having dinner instead.

Tomorrow, Morning Brew and two shakes.  I have some ideas about how to make it more palatable and got what I needed at Costco.  Tomorrow, cocoa and banana and then frozen berries with some yogurt (maybe).

Fibro Fix 21 Day Challenge: Day 1 Report

My husband and I did a soft start today, mostly because not all the shake stuff had been gathered (and we're still tweaking our shake versions).  We went with two different options, one for him with a little bit of pea protein in it since he wants to try it and test it, and a whey protein for me since I've tried it before and know it's okay.

For my protein shakes, I'm using just under a scoop each shake of Garden of Life Grass Fed Whey protein powder, and the vanilla is really strong.  For the greens, proteolytic enzymes, and probiotics, I'm adding one scoop of Green Vibrance.  There's fiber in that, too, but for more fiber, I'm adding chia seeds, too.  Tomorrow morning, I will add some of my TracHealth Chia Plus Superfoods drink mix that I know helps me with energy.

For supplements, I'm sticking with my usual barrage of pills, from vitamin D and CoQ 10 to my multivitamin and magnesium/calcium and more.  We added N-Acetyle Cysteine as he recommends in the book and will take that with the shakes, but the rest are all in my usual supplements or in the greens mix.

For exercise, today, I did a bit of walking but not enough.  Tomorrow, I will do my water exercises since I should be able to get in to the Y for that.  If not, I will do more walking and aim for the Y on Tuesday.  Dr. Brady says to do a little bit of low impact exercise daily.  Now, Dr. Liptan, author of The Fibro Manual and speaker at the Michigan Fibromyalgia Awareness Day conference yesterday, says that we need 48 hours to recover from exercise since our fascia are all so tight, but I think doing more daily will be better for me as long as I don't overdo it.  I do plan on doing her warm up first.

Pain-wise, it's been a rough day, and the headache/paresthesia are bad today, but the last two days used up all my spoons and then some, and then we had a massive storm system park itself over us all day.  Tomorrow should be better.

Living with Fibromyalgia: FibroFix Book Review

Setting:
My couch and the hotel last weekend where I read the book, The Fibro Fix by Dr. David Brady, ND.  My fibro has been bad for months, now, though the nicer weather has been helping a little.  The chronic headache is bad, worse since the failed Topamax trial.

Book Summary:
Dr. Brady's theory about fibromyalgia is that A) it is often other conditions that are misdiagnosed by doctors who don't take the time to really find out what's going on and by the fact that many diseases/conditions are very similar and B) following a high-protein diet that eliminates allergens and helps detoxify, drinking a lot of water, low-impact exercise, and working on training the brain to relax instead of react are the best ways to deal with the disease and reverse the symptoms in some patients.

He has a 21 day detox diet plan, and while he really pushes his products for sale on his website, he tells readers of the book how to come up with something similar at home.  To be fair, what he says to do instead is missing many of the components in his boxed program, so it isn't exactly identical.

In reality, his diet is similar to some other gut biome resetting diets on the market these days (such as Dr. Mullin's Gut Balance Revolution), and he makes good points about the difficulties of exercise and living with pain.  He is pretty clear on the latest theories and research regarding fibromyalgia and chronic pain, and his plan is a good one.  I will be starting a modified version of his 21 day program this Sunday, as will my husband.

Problems So Far:
Brady has a couple of websites, and his customer service people admitted to me this week that the FibroFix 21 Day box is identical to the PaleoCleanse 14 Day box.  Turns out, Brady is the Chief Medical Officer of Designs for Health, which is actually the company, Ashley Martin, but FibroFix is supposedly made by Formulated Nutricueticals, LLC in Florida, though Formulated Nutricueticals said that everything is from Designs for Health.  Moreover, when I looked up Formulated Nutricueticals, their actual office is the same as Dr. Brady's in Connecticut.

I found this out in trying to track down information about the source of their pea protein.  My husband is a QA chemist for a nutritional company that stopped using pea protein two years ago due to too much mold.  Turns out Designs for Health only has testing certificates for the final product, though they say they can provide quality certificates for each component/ingredient on their website.  I've been told over and over that they test and assure quality, but the certificate just says the testing method is "by input."  I'm curious where they're getting their pea protein and how they're making sure it doesn't have mold.

After that, I'm not sure I can recommend buying Dr. Brady's supplements or the FibroFix/PaleoCleanse box programs.  The actual program has a lot going for it, which is why we're trying it, and I hope that it can help get this latest flare under control and help me get my pain at least at a more manageable level.

Technology Saves the Day for Us Chronic Illness Types

It has been a long time since I have posted.  Things have been a little crazy.  I lost my insurance-provided long-term health insurance and then got it back after a lot of tests, doctor visits, paperwork, and phone calls.  I got married.  Then, a fibro flare hit around Christmas and brought with it a headache and parasthesia on the top of my head.  It hasn’t let up yet, and while I miss teaching deeply, I have finally realized that I just cannot teach anymore.  I think I will always grieve that loss.

Anyway, I have seen a lot of posts in the chronic illness community about positive thinking and more, but I have not seen as many about how to manage our illnesses.  As a former teacher, I know about having to manage a lot of things all at once, and thank goodness, we have technology to help!  These last several months, I have tried one app and tech thing after another with varying success. Some of the ones I tried for my last post just don't work for me any more.

Tech I Use Now for Managing My Fibromyalgia:

Smartwatch!

First of all, if you have to take a lot of meds or have trouble remembering things, get a reminder watch or a smart watch.  I have tried the Martian Notifier smartwatch and the Samsung Gear S2.  The Martian watch is more of a man’s style watch, but boy, is it handy.  Its “find my phone” feature is really helpful considering I misplace my phone several times a day, but the little readout screen is just big enough to read reminders, see who’s calling (for when I leave my phone in another room), and more.  It’s a really nice piece of equipment, and the vibration is just enough to really get one’s attention.  We got one for my stepson who is on the ASD spectrum, and it seems to be helping him remember things.  We’ll see how that goes once the novelty wears off.

The Samsung Gear S2 is a godsend.  My son wanted to switch to the Apple Watch after switching to an iPhone, so I got his Gear S2, and I love it!  I keep track of my sleep, steps, water intake, reminders, texts, and more on it, and I’m really not sure how well I would do without it.  It does more than the Martian watch, though the vibration feature isn’t as strong and is a bit easier to miss.  It is my fitness tracker, reminder, and more all in one thing on my wrist that isn’t too heavy.  The Martian watch is bigger and heavier, and it was starting to bother my wrist a bit, but the Gear S2 does not.

Memory Assistance Apps!

For apps, I have whittled it down to the few I really use and trust now.  Trello is still in the running since I have a card with all of our stores and running shopping lists on it that I shared with my husband.  That way, he can add things to the grocery lists, as can I, so it doesn’t matter who goes to the store.  I keep track of goals and more on there, but I love it for the shopping lists.

Evernote is still a top contender.  I tutor, so I keep all my lesson plans and tutoring notes in there, which is helpful when it can be weeks in between sessions.  It has helped with the novel I’m writing, with kids’ appointments, and I use Penultimate connected to Evernote for all of my doctors’ appointments and disability paperwork.  With WebClipper, it’s even better for researching supplements, new medications, and new fibromyalgia research.  It better never go away!  My stepson is starting to use Google Keep, though, and for those who don’t want to mess with managing lots of notebooks, that’s a really clean, easy-to-use app.

On my phone, I use Healthy Routine, a great app for reminding me to take my supplements and medications, exercise, and get to sleep.  It works with my watch, too, so I never miss a reminder there.  I’ve tried others, but this one is the simplest to use and easiest to manage.

Data Tracking Apps!

For tracking food and weight, I still use LoseIt, though I’m thinking of just switching to S Health with the watch.  LoseIt has years of my data, though, and it shows how I’ve struggled and where I’ve done better.  S Health seems to do a bit more, though, so I’m putting it through a trial to see if it’s as good or better.  LoseIt is really easy to use, tracks all sorts of health indicators, and has a large food database. Personally, I think it's worth the premium price for all the extra tracking data.

Another important tracking app for anyone still dealing with a cycle is My Calendar.  I don’t use it to track my pain since that’s pretty much constant now, but it is a comprehensive app that can track a woman’s cycle and all the symptoms that go along with it and more.  It even has great ways to show your symptoms on charts and calendars.  It is the best one I’ve seen and very easy to use.  It sure is handy at doctor appointments!

Google Calendar!

Google Calendar gets a spot all its own, as I don’t know what I’d do without it.  First of all, it doesn’t matter if I’m on my phone, my laptop, or my iPad (for when the laptop is too heavy or difficult to deal with, pain-wise), I have my calendar right there.  Google even recently added reminders and goal-setting reminders within the Calendar app itself, which totally rocks!  I love that I can set a quick reminder for a certain time right on my calendar and know that I’ll get it on my watch.  It helps with accountability and just plain memory problems.

I also love that I can color-code events.  For my daughter’s driver’s training classes, I found that I was forgetting them even with them on my calendar and getting reminders, but changing their color so they stood out made the difference.  I have all the kids’ school calendars, activity calendars, parenting time calendars, and the myriad appointments all in one place with reminders set so that I have time to get ready and get there.  While I still use a paper planner and make myself sit down and review it every few days at the least, Google Calendar has saved me more than once.

For those of us with memory problems, too many medications to keep track of easily, and symptoms we need to track, technology can help.  If you have any favorites you like to use, post them in the comments!