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!

Teaching with Chronic Illness Survival Tip: Get Help Staying Organized

One of the first things to be affected in any chronic illness is memory.  Pain, medications, lack of sleep all can negatively affect one's memory.  Given everything we're supposed to remember as teachers, though, that memory problem can turn into a big issue when evaluation time rolls around.

The good news is that there are many ways to support memory loss.  Since educators are already used to documenting, it just means documenting a bit more and more effectively.  This is also where your phone or tablet can really come in handy, even better than a million sticky notes on your desk.

Memory supports I use and suggest:

• Evernote.  True, there are tons of good note-taking apps out there now, and you might find that a different app works better for your style, but few come close to the power of Evernote.  You can try it for free before deciding whether or not to pay for a higher level, and many find that the free version does more than enough.  You can take all kinds of notes in Evernote, from taking pictures of handwriting or meeting handouts to making an audio note of a conversation.  It even has scanning capabilities now, so you can scan important documents and have them with you all the time.
  
  The best part of Evernote is the ability to easily organize and find any notes.  You can put notes into notebooks, add tags quickly so you can search on that topic and find the note fast, and you can even stack notebooks.  Evernote even has handwriting recognition software, so you can search picture notes of handwriting and find what you need.  Add in Evernote's ability to take notes on PDFs and even use a stylus to write your note on your phone's screen and then just tap what notebook to put that note into, and it's an adaptable, easy to use way to document what you need help remembering.
  
  I am also a fan of Evernote's ability to work with Google apps.  WebClipper, a Chrome extension, means that you can clip anything you find online to any notebook in your Evernote account.  You can even tie your Evernote and Google Drive accounts.  I have been using Evernote for years now, and I still haven't figured out quite everything it can do.
  
• Livescribe Pens.  I am still new to this one, but what I like is the ability to easily take audio and written notes at the same time.  With pain comes brain fog, and it really helps to be able to take audio notes.  These are great for parent conferences, but just make sure that you get permission to record from all parties, per your state's regulations.
  
  What's really nice about the Livescribe Pen is that you can take notes in meetings, record the audio, and then watch the audio playback on the free app on your phone, which highlights each word as it's written along with audio from that moment.  If you are going into a serious meeting and worry about missing something, this is a valuable tool.  If anyone is concerned about consenting to the recording, just send them the link to the note, and they can hear it all, too, so everyone has a copy.
  
• Moleskine or other paper notebook.  I use a Moleskine weekly planner so I can take notes for the week as well as see what I have scheduled.  I'm still enough of a paper person that I have to write down when my appointments are so I can see the whole week at a glance.  Moleskine and other similar planners are also great for the bullet jounal method, which many people really like.
  
• Google Calendar.  The best part of Google Calendar, at least for me, is the ability to set multiple reminders.  While I keep a paper planner, I also keep a full copy on my Google calendar as well.  That way, I can set reminders, have the map to the new doctor's office available on my phone, and even attach notes on what to bring, when to get there, or whether or not I can eat beforehand.  I can even attach the link to an Evernote note in the comments box if I need to be able to show the doctor a copy of my medications or whatever.  Google Calendar will even add on driving time and send you a notification of when to leave to get there on time.  For those of us with chronic illness and therefore many appointments outside of work, this can be a real help.  I even have added in the water yoga classes I need to take and reminders for exercising.
  
• Brain Focus or a similar Pomodoro or timer app.  For those of us who need reminders to get up and move every 20-30 minutes so our muscles get the stretching they need, this app is really helpful.  I also use it for any project that I know can suck me in (i.e. grading, lesson planning) so that I take breaks as needed and remember to go to the bathroom or stretch.  You can even set it for the classroom and use it for 8 and 2 or a similar method.  Even better, the phone app can disable your phone's wifi and sound during a work session to help you stay on task better. 

Cell phones these days are powerful things, and there are many tools available to us to help with memory issues, reading problems, staying organized, or even staying on task and taking breaks as needed.  If you know of any other ones that help, put it in the comments!

Chronic Illness and Self-Care: Arts, Crafts, and Music Can Help

One of the side effects of teaching is that we often give up our hobbies, our crafts, even our art for our job.  Our jobs are so overwhelming that we often sacrifice our music, our art thinking we don't have time for it, not with needing to make another parent phone call or write another lesson plan.

For those of us battling chronic illness or even disability, though, we need to make time for our crafts, our art.  An interesting study by Stuckey and Nobel in 2010 found that patients with chronic health problems do better if they create something, anything, especially visual art, music, dance, or creative writing.  In all reality, it helps all teachers, since the study found that, "despite methodological and other limitations, the studies included in our review appear to indicate that creative engagement can decrease anxiety, stress, and mood disturbances" (Stuckey & Nobel, 2010).  For those of us living with pain or chronic health issues, creating music or poetry, painting or knitting, dancing or sewing can help us heal: "When people are invited to work with creative and artistic processes that affect more than their identity with illness, they are more able to 'create congruence between their affective states and their conceptual sense making.'104(p53) Through creativity and imagination, we find our identity and our reservoir of healing" (Stuckey & Nobel, 2010).  Finding that "reservoir of healing" would be amazing for most of us.

So, how do we fix this?  Kate Harper interviewed Rice Freeman-Zachery, author of Creative Time and Space: Making Room for Making Art, and she came up with ten ways to make time for our creative processes.  In reality, many of these are tricks teachers already use to make time for our jobs at home, but we can also use these to fit in our music, our art, our writing.  I personally like #7, wearing what we need to feel like the artists we are.  We so often wear teaching clothes, even outside of the classroom, putting on that professional mask  It's okay to wear what we need to wear, put on what you need to write, create, sing, dance.  Do it to feel better, to be whole.

References

Harper, K. (n.d.). 10 Ways to Make Time for Your Art: An Interview with Rice Freeman-Zachery. Retrieved June 11, 2016, from http://emptyeasel.com/2009/10/19/10-ways-to-make-time-for-your-art-an-interview-with-rice-freeman-zachery/ 

Stuckey, H. L., & Nobel, J. (2010, February). The Connection Between Art, Healing, and Public Health: A Review of Current Literature. American Journal of Public Health, 100(2), 254-263. doi:10.2105/AJPH.2008.156497 

Denial and chronic disease: Turns out that it's not all bad.

When we get a major diagnosis, even if it's one we've been expecting, there is always a certain amount of denial, at least at first.  Okay, the denial can last longer than just at first.  Just when we think we have come to terms with everything, denial sneaks up on us, and we find ourselves facing the realities of our diseases yet again.

One thing I have read about in studying fibromyalgia, my main diagnosis, is that loud music and other stimuli can trigger a flare.  One of my jobs on medical leave has been to figure out my triggers and learn how to manage my disease better.  I thought I had figured out most of them, and then I went to my daughter's high school band concert tonight.  I love band, and I love her concerts.  I was in band all through school, and I love watching her get better every year.  Tonight, though, for the first time, I reacted to the music and had a fibro flare.

It felt like the music was hitting me in waves.  Every nerve felt like it was on fire, and then my muscles tightened up.  I couldn't leave in the middle of the piece without crawling over people, and I wasn't sure I could even stand up at that point.  I sat there and used every pain control method that has ever worked on me and prayed for the piece to end faster.  I managed to get through without entirely breaking down and crying from the pain, but this flare up has yet to calm down in the hours since.

It all started with denial.  I was up all night in the emergency room with my fiance, sitting in a chair that got progressively harder to sit in as the hours passed.  Then, after a bit of a nap upon getting home, my daughter needed to get picked up from school due to illness.  (Yeah, it's been one of those springs for our family.)  Errands for meds and provisions were followed by the concert.  I was in denial of classic triggers for fibromyalgia: doing too much and getting overstimulated.  I had to be the good mom, the good fiance, and I was in denial about my limits and fibromyalgia reality.

Here's the really interesting part for living with chronic illness, though: denial isn't always a bad thing.  There are some studies that argue that denial is a healthy coping mechanism because it's based on hope: "Quite simply, being unrealistically positive may be a coping mechanism that helps people feel better and is associated with positive social relationships and motivation to work. Further, it appears to aid people to recover from particular health-related stressors (Scheier & Carver 1985, Carver et al. 1989, Scheier et al. 1989)" (Alvani, Parvin Hosseini, & Alvani, 2012).  While I would definitely not argue that my current flare up is a good thing, if I had just stoically accepted my fibromyalgia and decided I had to stick to strict limits, I would not have been there for my fiance, and I would have missed my daughter's concert.  The pain is worth what I got and was able to do in exchange.  Now, though, I know that loud band concerts can be triggers and can prepare better for the next one.

One could argue that we educators live in denial.  If we just stoically accepted our limits, we would have to give up on students and schools.  That just isn't in most educators' DNA.  The very nature of our jobs requires us to be optimistic and positive about the future, even when all the data says otherwise.  To be a disabled teacher means that we will revert back to that positive, living-in-denial teacher at some point, and that's okay.  Turns out, we'll have better outcomes because of that.  Don't let go of that hope, and indulge in denial now and then when needed.

References

Alvani, S. R., Parvin Hosseini, S. M., & Alvani, S. (2012). Living with Chronic Illness and Disability. International Journal of Business, Humanities and Technology,2(5), 102-110. Retrieved June 3, 2016, from http://www.ijbhtnet.com/journals/Vol_2_No_5_August_2012/11.pdf

 S. (2015, March 12). Hypersensitivity To Sensory Stimuli In Fibromyalgia ». Retrieved June 03, 2016, from http://www.fibrodaze.com/hypersensitivity-fibromyalgia/