Monday, May 21, 2018

I Feel Stuck. It's Time for a Change.

My fibromyalgia pain has been dramatically worse this school year despite my not teaching.  I have tried mild diet changes, changing my supplements, different exercises, all to no avail.  I even went back to PT, but that got my tremors going so badly that I split my lip trying to hold my head up out of the water in the pool.  Yeah.  So, I'm stuck.

I have a disease that has no cure.  I'm stuck with this one for the rest of my life or until researchers finally figure it out and find better treatments and, hopefully, a cure.  Given the slow pace of research and how far behind we are, I'm betting on decades at the very least.  Decades of pain, tremors, a daily headache, poor temperature control, GI issues, and more.  It's hard not to feel angry or get depressed at the very thought of living like this for years more.

So, I sat down with myself and tried to evaluate any changes (other than in pain level and some new symptoms that are really annoying).  We moved this last winter, and that's been a good thing.  I love our new house so much and feel so safe here--I hadn't really realized that, before, I hadn't felt safe underneath it all.  Now we're in a home that really feels like home, and I'm very, very blessed.  The allodynia got a lot better for a couple of months after the move, though it's back and pretty bad right now, and honestly, I'm wondering if is somehow tied to allergies since it's allergy season but my usual respiratory allergies aren't kicking into high gear like normal.  We got a new mattress, and when I do sleep, I sleep harder now.  Of course, that means more pain when I wake up because I'm not moving as much, but I'll take the trade-off.  We got a new dog, and she's a lot of work but worth it in many ways.  She's a real cuddler, and on bad days, I need that (as well as the two cats cuddling me, too, though the cats and the dog don't cuddle at the same time).

On the other hand, I have not been eating right for months now.  Junk foods, desserts, not enough protein, too much dairy.  The carb cravings have been brutal, and while I know that those mean my body is needing protein (found that out years ago), I've been going for the carbs instead.  Not enough water, too, and that's even worse.  I've been eating out more ever since the move, even though I know about my soybean oil allergy and how darn difficult it is to eat out and not run into that in everything.  I've also been more sedentary, mostly due to increased pain levels.  At least, I'm not doing all the movement and exercise I should be doing.

I also looked around at my family.  My husband's weight has crept back up again (as has his pain level), and my stepson has definitely been getting rounder and having trouble with low energy.  My son and daughter aren't eating right, either, though they don't tend to gain weight much at all.  If anything, my son's lost some because he's just not eating as much as he needs to and my daughter is eating far too many carbs and nowhere near enough protein.

So, I grabbed my books, re-read my diet spreadsheet, researched things a bit more, and I started thinking it was time for a reset, something like Whole30 or the Gut Balance Phase 1, to get us back on some sort of track.  My disease may be for decades, but I can't give up, and diet does have an impact whether I like to admit that or not.  While at Costco with my mom right before Mother's Day, I found the 21 Day Sugar Detox book, and I really liked it.  The diet plan is sound and not super crazy to follow, the meal plans and recipes look good, and I like the journal aspect of the book.

I talked with my husband about it, and he encouraged me to do it but to consider modifying the diet to make sure it's not too low carb for me.  I talked with my stepson about it, and he's actually in favor of it because he remembers feeling better when we were on the Gut Balance diet and wants to feel like that again.  I talked with my daughter (that didn't go well) and my son (that went better--he agreed that he needs to eat breakfast and eat more protein, so that's a major win!), and we started the new 21 Day Sugar Detox diet today.

Day one of my modified low carb diet:
I weighed myself and updated my measurements. A couple of my measurements are down from January, even though I've been feeling extra fat and icky lately and my weight went back up. That's interesting.

I ate the breakfast I made last night, a turkey sausage frittata from the book, and it was amazing!  Where has that been my whole life?  I'm looking forward to the leftovers and the next frittata recipe.

I will say, though, that I'm keeping Pepsi as needed since it's one of the only things that works on my daily headache (doctor says it's fibromyalgia caused occipital neuralgia--either way, I can't take anything for it, and I really don't like it). I'm also keeping my sourdough bread since it's fermented and I've tested it and know it works for me. I also know, from having done a stricter version of this before, that I need more carbs than a really strict low-carb diet allows. Basically, the diet I'm doing is no added sugar (other than Pepsi or the sweet tea I've found works almost as well that I substitute sometimes), no breads (other than mine) or gluten stuff, little dairy, lots more veggies and protein.

So, yesterday started the massive food prep, and I was lucky that my husband helped. It was too much for just me with my dang fibro. Today, I am making bread, boiling up some eggs, already put up some shredded chicken I cooked in the pressure cooker, and I need to make something else I'm forgetting.  

I can do this.

Tuesday, March 20, 2018

We Need to Talk about Racism

I got involved in a Twitter conversation yesterday that got me thinking about some of the main biases we have as educators and how we don't even know we have them much of the time.  They cover everything from how we think teachers should dress to what strategies we prefer to use to the decisions we make about students.

Let me get a couple of things out of the way first:

Due to the fact that we are still dealing with the fallout of colonialism and slavery and that our education system is a part of the overall systemic racism endemic to life in the United States, we need to talk about what that can mean in the classroom.

Let me be clear: using the best strategies and classroom setup for our students so that they have the best chance to be successful is what we professionals are supposed to do.  It is not our primary job to reinforce the system.  Our primary job is to teach the students we have, not the ones we wish we had, and to provide the right kind of learning environment they need to be successful.  If we teach in a way that works for one culture but not all of the cultures in our classroom, then we aren't teaching our students correctly.  Using a particular teaching strategy just because it is what we grew up with or because we personally like it is not enough: we need to reflect on our teaching practices, why we use the ones we do, and whether or not they are the best strategies for our particular students.

One argument I have run into repeatedly from teachers is that we have to get our students ready for the real world, so that means we should teach in this way or that.  While I agree with that argument at its core (we need to get kids ready for the real world), I disagree with how it is usually implemented in the classroom.  We don't need to toughen our students up.  Our students have grit in spades, thank you.  They need their classrooms to be safe, supportive learning spaces, not harsh spaces filled with microaggressions.  Students of color need safe spaces in which they can grow and learn and ultimately develop the skills and knowledge base they need for the real world.  They live in the real world already, and their families work hard to teach them those survival skills.  Our job is to teach them the rest in a supportive environment.

Another common argument is that, if we change our teaching strategies so that they work better for our students of color, culturally responsive teaching, we are babying our students and being racist by having lower expectations.  Culturally responsive teaching (CRT) done right is not being racist: it is providing that safe, supportive environment in which our students of color can best learn.  That isn't racism, reverse racism, or privilege.  That's good teaching.  CRT does not mean lower expectations at all (students are still expected to work hard, get good grades, behave properly for the given situation), just that students get the strategies they need to have the best chance of success.

Let's look at one strategy for maintaining order in the classroom and seeing which students understand the directions or material and which don't: eye contact.  In the dominant white culture in the US, it is a sign of disrespect not to make eye contact with a teacher so as to show that one is respectfully listening (i.e. "One, two, three, eyes on me").  This is not the case for all cultures.

For example, in the DinĂ© Nation (Navajo), it is a sign of disrespect for a student to make direct eye contact with a teacher.    When white teachers do not reflect on their cultural biases and learn about cultural differences, they can do a real disservice to their students and their classes when they force DinĂ© students to make eye contact.  The students don't want to be disrespectful, and so many end up feeling torn.  Requiring students to act in a disrespectful manner just because your culture says otherwise does not help lead to positive outcomes.

It is similar with autistic students; it can be physically painful for autistics to make eye contact, so when a teacher requires it, that teacher is causing their student pain and possibly triggering a fight/flight/freeze response and an increase in adrenaline, which we know hampers the creation of neuronal connections in the brain.  It seems like such a little thing, but making eye contact is a cultural thing, not a required behavior for life and definitely not if it keeps a student from learning the needed skills and material.

We teachers use many strategies that, ultimately, are rooted in the culture we come from.  It is not our job to demand students conform to the dominant white culture: it is our job to provide a safe learning environment for all students.  Little things, from requiring eye contact to using proximity (another culturally based practice to modify student behavior) can actually be microaggressions and create a negative learning environment.  

CRT is not about lowering expectations, babying students, or engaging in reverse racism: it is about using the best strategies for our students and providing the environment they need in which to grow and learn best.  We teach students, all students, and it is wrong to force students to conform to the dominant white culture's preferred strategies and cultural norms because it can impede their learning and teach them that they aren't safe in their schools.  If we truly want all of our students to succeed, we will engage in the necessary self reflection and use CRT to better teach our students.

Thursday, February 8, 2018

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.

Tuesday, September 19, 2017

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!

Tuesday, August 22, 2017

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.

Monday, August 14, 2017

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.

Monday, August 7, 2017

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.