Final tally: Camp NaNoWrimo April 2018

Yes so I didn’t think of this until April 9th but that’s okay. Dammit. This will be an experiment. I picked time this year since hours/minutes were an option. It’s really cool they made the “camp” months less rigid. I’ve also realized, since it’s the ninth day of the month, April seems to be a bad month for me. Weather is a big part of it.

Tracking my writing activity –

  • 1 – gaming – Shadowrun
  • 2 – writing wasn’t fiction/for Camp Nano
  • 3 – 15 minutes
  • 4 – 30 minutes
  • 5 – 30 minutes
  • 6 – DFW Fiberfest – most of the day
  • 7 – migraine
  • 8 – migraine recovery but I looked at my writing!
  • 9 – appointment, chores, 20 minutes
  • 10 – 60 minutes and a 30 minute walk, realized a different approach to my story
  • 11 – creativity spent in other ways, like knitting
  • 12 – 15 minutes
  • 13 – 30 minutes
  • 14 – busy day outside of the house
  • 15 – recovery
  • 16 – bad day, with an appointment
  • 17 – doctor appointment with injections in my neck
  • 18 – other things, like going for a long walk, chores
  • 19 – I think it was a rest day
  • 20 – 85 minutes!
  • 21 – walk, rain, pain levels higher
  • 22 – chores I think
  • 23 – 40 minutes
  • 24 – 45 minutes
  • 25 – long walk, just thought about writing
  • 26 – from this day until
  • 27 – ….
  • 28 – ….
  • 29 – this day my pain levels had doubled and then tripled and then gaming
  • 30 – things better. doctor appointment and 50 minutes writing

Came up with a total of 420 minutes writing and looking back at previous years, April is not a great month for me. I set my goal for the Camp NaNoWriMo event too high but learned how to track my writing in a way I can keep up with and SEE PROGRESS!! when I’m not actively writing sentences and developing scenes. Also, only counted active focused work.

post updated May 1, 2018 with full month of tracking

My DFW Fiber Fest 2018 haul

Last year I didn’t go because of how much yarn I purchased in 2016. I almost didn’t go this year except that the small businesses who attend conventions/shows/fests like this, usually have some kind of limited supply thing. This year, instead of posting a bunch of random pictures on social media I decided to write up a blog post! This means I’m adding project information too. Side note: I recommend attending something like this with a plan.

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Obligatory? picture of the pamphlet which includes information the classes I can’t attend because it’s too far from home and I’d have too much issues with pain.

Some more bags that I probably don’t need but look at the designs!!!! The first is from Diana Couture. I’m definitely a fan. The little red bag is by Grace’s Cases. I happened to buy one of her bags online and then accidentally learned she was at the show. If you like smooth tops to your project bags, check out her sacks.
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That little baby zipper bag is for stitch markers and it would work for coins too.
(Also from Grace’s Cases.) I plan to use this teal gradient set for some sort of crescent shaped shawl. Unfamiliar with the yarn and can’t remember where I got it besides a place out of Colorado, but it filled the hole in my stash for a nice single color gradient.

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And some self striping yarn from Brazen Stitchery. Socks or mitts, undecided for now.

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And some specific planned projects:

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This pair of yarn carnival on the left is a gray and sorta mother of pearl and I plan to make this shawl out of it. The pair of yarn carnival on the left is for a color work cowl. I started a color work scarf and it blew up my brain after the first row. I’m hoping the cowl will be some good learning.  The purple will be the dragon.

And then I made 2 sets of half skeins from Lazy Cat Yarns for some smaller striped shawls. (How cool is half skeins of fingering weight? Right?) One is for Milky Way and one is for Intergalactic.

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And I’ll end with the single skeins I bought. The first one is inspired by blue bonnet flowers and will be paired with simple black to make this shawl. It’s by Destination Yarns and it’s smooshy!

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This next skein is by Leon Alexander and the picture doesn’t do it justice. Don’t miss the green in there. I’m currently trying it out in this zig zaggy shawl scarf thing. Their yarn is amazing and bright.

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And last, a yarn that’s new to me and a color I usually don’t go for. It hasn’t told me what it wants to be when it grows up. They had so many different colors and I hope they update their online store on a regular basis. I must keep an eye.

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And then two weeks after we were at DFW Fiberfest I bought some yarn from yarn dot com to finish out for a sweater. So many projects, so little time.

Depression

This is the first winter season I’ve not been on (strong) antidepressants since 2012? And I possibly should have been on something before then, but I’m also currently taking another medicine that’s a mood stabilizer and I know it’s helping too. Side note, my biggest known depression symptom is the “losing interest in activities you enjoy.” Except for video games, of course.

In the past I always assumed I got stressed around the holidays because of how people being stressed in general can make you stressed. And holiday STUFF. This time, there was less to be stressed about. (We didn’t do official presents for example.)

After a couple of days of barely being able to cope with anything external to me – about a month ago? I started to put things together and looked up seasonal affective disorder.

First, there’s this:

Seasonal Affective Disorder (SAD) is not considered as a separate disorder. It is a type of depression displaying a recurring seasonal pattern. To be diagnosed with SAD, people must meet full criteria for major depression coinciding with specific seasons (appearing in the winter or summer months) for at least 2 years. Seasonal depressions must be much more frequent than any non-seasonal depressions.

Huh. So what I assumed was stress was likely my depression being worse. Back to having difficulty with lots of stuff, like the prospect of needing to make an unexpected phone call basically causing my brain to shut down. Add in my counselor getting sick and having to reschedule counseling a bunch, when I actually really want to go because I want to talk about this SAD thing. Then I remember how I had similar problems last year where I really wanted to see my counselor but she got seriously sick. (I’m hoping she’s “just got the flu” but the flu is pretty tough this year.)

Then everything began to come together, especially when I read this part:

Symptoms of the Winter Pattern of SAD include:

  • Having low energy
  • Hypersomnia
  • Overeating
  • Weight gain
  • Craving for carbohydrates
  • Social withdrawal (feel like “hibernating”)

Oh. huh. Hibernating! So not seeing people and not being on social media and not writing blog posts and just basically being at home, depression explains all of it. I think I’ve become an expert at being functionally depressed. Do the stuff that needs to be done. And I’ve been having no trouble getting to sleep and sleeping like the dead most nights. That’s not normal for me. This coupled with regular depression symptoms explains why I had so much trouble with NaNoWriMo in November and why I come up with all my new knitting project ideas in the summer. Quoting from here by the way.

My advice for dealing with chronic thrush

This excludes medicinal intervention. This is not medical advice; I assume you’re an adult and you accept the consequences of your actions.

Peppermint has documented anti-fungal properties. I have tested and discovered that peppermint tea daily will help keep the thrush down. I’ve also started drinking some mint or peppermint tea after drinking milk or eating sweets like ice cream. If I don’t drink peppermint or mint tea for a few days, the thrush can start to make a comeback.

Probiotics. Prescript-assist probiotics suggest you empty a capsule into your mouth to help combat the thrush. I suggest doing this at bedtime. It helps. Also, taking a probiotic normally of course helps.

Sinus washing. If you get congested when you have thrush, it could be traveling up into your sinuses. Sinus wash can help remove the thrush, slow it down. I prefer the bottle style and recommend this brand. Make sure you use distilled water. Please, use distilled water.

Depending on your situation, you might also find a tongue scraper to  be useful. You have to be careful because a tongue irritated by thrush is more likely to bleed. You can use a tongue scraper too much.

If you get really desperate, you can mix hydrogen peroxide and water together and gargle. It helps to tilt your head back and let the mixture sit for 5-10 seconds. You need a quarter of the amount of peroxide compared to the amount of water. Put some water in a cup, and just a tiny bit of peroxide. Do not swallow. Do not do this very often because it could also effect the positive bacteria in your mouth.

 

Beginner’s Guide to Histamine Intolerance

Starting with a crash course on how to research on the Internet.

Important background information: I have an MS in Applied Sociology. I spent years in college learning how to identify objective sources for information. Clearly, you don’t know for sure that I’m lying, but who would lie about one sociology degree, let alone two? Sociology degrees aren’t sexy. Basically, a good rule of thumb is to judge every nonfiction book (and personal website) by its author. A doctor writing about histamine intolerance is going to do a better job than I will. Also, if someone is trying to sell you something in every single article they write, maybe they aren’t the best source. Or at least not your first and only source. I recommend looking for information that’s the same across multiple sources. A journalist trying to educate you about something is someone who’s good at telling people about stuff and things, not automatically good at researching stuff and things.

Update Jan. 7, 2018 – I saw this on Twitter. A guide to read and understand scientific papers for a non-scientist. (There’s a PDF link included in the page linked.)

Now that’s over and we can start. First and foremost, histamine is important and your body needs it. It’s necessary for healing. However, your body doesn’t need buckets and buckets of it.

I’ll start with some online sources and then a couple of books. When I started researching histamine intolerance there was very few things on the internet when you searched simply “histamine intolerance” and now such a search brings up clear easy to read sources as well as confusing sources that want you to buy recipe books or expensive supplements, or both. I think I started in 2008 and in the last 3 years the information seems to be growing exponentially. The first source Google provides is actually written by a doctor. Supposedly. I hope. She could be lying. but –  She also refers to one often cited academic journal article about histamine and histamine intolerance.

Side note, don’t be afraid of academic journal articles. I would suggest reading them slower – without skimming – if you’re unfamiliar. Also if you can, print it out and underline or highlight the parts that interest you. You’ll find that histamine intolerance is a little easier to handle if you understand some of the science behind histamine and what it does to your body. It’s completely understandable if you don’t want to start there though and so I’m only including one journal article here.

This article titled, Histamine and histamine intolerance, was published in The American Journal for Clinical Nutrition. I especially like this article because of a table that summarizes, or breaks down, symptoms mediated by histamine. Basically histamine is involved in the process of feeling that symptom. Again, it’s important to remember that your body does need histamine to function.

There are lots and lots of other online sources and remember they aren’t all equal. I recommend looking for different sources that agree. (Yes, I’m repeating some of the important things on purpose.) Also consider the type of information you’re looking for. For example, there are a ton of lists of high histamine foods out there and very few are exactly the same. You will probably find you can eat small amounts of some high histamine foods and that other high histamine foods are very bad things. With histamine intolerance, all food lists should be treated as guidelines. You know your body, you have to test on your own. However, some other information like food storage and preparation is fairly standard and doesn’t take a college degree to understand. Let’s continue with sources.

If you only want one link about histamine intolerance for now then go here.

1. This one mentions handling and storing of foods. Old food is higher in histamine and so this is an important factor of histamine intolerance diets. This is probably the biggest and most important thing you can do that I guarantee will make you feel better.

2. Food lists: by degree of tolerance, a more general explanation, and a list meant to help control chronic hives. (But at the time this was posted the 3rd link didn’t work. It’s worked in the past so I hope it’s temporary.) I recommend using a book for a food list and not getting bogged down in the details. I recommend using a food list to help you out in the beginning and help determine the real big trigger foods you need to avoid. Like for me, the last time I ate fresh grapes it was as if I was allergic to the grapes. It was horrible. There are high histamine foods you should (eventually) be able to eat small amounts of. Especially if the food in question is fresh.

3. A detailed site, which includes more than just food intolerances, by a board certified practitioner (That’ll make more sense when you see her bio) from Australia. She’s not a doctor, but she clearly has done something to educate herself. She’s also not pushing books at your all the time. I wouldn’t use this as a primary site, but it’s useful to see what information is the same across different sites.

4. This is a good general website about food intolerances and also includes a lot of information on histamine intolerance. The majority of the histamine intolerance information comes from research completed by Doctor Janice Joneja. She’s been doing this for decades. Note the histamine intolerance page has a lot of links and tons of information. It’ll be overwhelming if this is new for you, but it’s a great link because it’s updated!

5. Chris Kresser also has a site with regular blog posts and a ton of information about more than just histamine intolerance. You’ll note he has been studying and teaching for awhile.

6. How about my favorite book ever for food intolerances and food allergies? This was my first source for histamine intolerance information as well as other food sensitivities. It helped me figure out my sulfite sensitivity too. I discovered histamine intolerance by accident because I already owned this book due to being diagnosed with food allergies and I was paging through it… I stumbled on the histamine intolerance diet and discovered I’d already eliminated most of the problem foods on my own. There were just two more foods, vinegar and tomatoes, and I was effectively following the diet. (Dude tomatoes are in so many places!) There was a few other things too, like hydrolyzed oils and preservatives that I didn’t know about. At the time, removing vinegar and tomatoes helped a ton. It’s probably worth it even if it sounds painful. Literally, this book saved me.

7. If you can find it used, this is best described (?) as an updated version of that book in #6. I say used because I think it’s sold as a textbook and so automatically more expensive.

8. I recommend anything by Janice Vickerstaff Joneja.

9. The concept of a histamine or inflammation bucket might be a good place to start in understanding the effects on your body. This site has a decent explanation for the inflammation bucket and I also find the site to be an example of something that is not a good first source. I am cautious about any site that says they research their posts but do not provide the sources with enough information to be able to find them and read on your own. I’m also uncomfortable with sites where every post or article also includes a sales pitch. Use caution with this website. Also, use caution with her Facebook group, when I tried to be a contributing member I found it full of people who didn’t want to learn and didn’t recognize that every body is individual and different.

It’s taken me forever to build this post because I wanted a collection of information without getting too in depth and detailed. There’s so much more you could add to this, like detailed information about how histamine works in the body. But I feel most people aren’t going to care about that immediately, they want to feel better sooner, then learn about the other stuff. This is probably verging on too long as it is. Regardless of the sources I’ve listed here, I think the most important things for searching the internet for information on histamine intolerance is to judge the quality of the source you’re using. Anyone can call themselves an expert on the Internet. I’m not an expert but I’m happy to share information so that other people can maybe learn things a little faster, and with less pain and frustration.

If you’re actually reading this and think I missed a large hole somewhere, leave a comment. Thanks.

I’m a bad patient

I’m not a success story. My body doesn’t follow a set of rules, or react as expected and this is just one example. My physical therapist finally said, you’re done here until you get a second opinion. She finally stopped ‘beating around the bush’ and said, you shouldn’t be here anymore because most people leave PT way before this. (She tried to say it as nicely as possible.) Would have been easier if she just said go away. The last three appointments before my last physical therapy appointment that I’ve had the therapist spent much of the time asking me how I felt, what I was doing, and how it felt after I did x or y exercise. Every time I thought I was walking out with a plan. Every time I was confused why we were going through these steps. Every time I noticed more and more faces, less and less feedback. (Each appointment was 4-5 weeks apart. She never clearly said if I was meant to be doing anything different in between appointments.) Every next visit something was different. Then, after what became my last appointment everything became clear. My theory, my assumption, was my physical therapist’s boss didn’t want her spending time on me anymore. I wasn’t making enough progress.

Probably partly because I have pain and problems with exercise that are super difficult to explain.

Probably partly because my physical therapist doesn’t truly understand the different effects multiple sclerosis symptoms can have on different people. There’s too much variety in the symptoms.

Probably partly because I’m not like the typical physical therapist patient who comes to get something fixed after surgery or an injury. I’m different.

Probably partly because I take more time than the average patient and I’ve had more intensive therapy than the average patient. Similar to how I see more doctors. And I ask questions about anatomy.

When I left the last appointment she was saying things like maybe I need to get a second opinion and, again, asking me what I wanted to accomplish in PT. – My previous plans weren’t good enough after someone else had reviewed my records/her reports. She suggested I email her  my schedule so she could give me pointers on how to increase my activity. We did that another time in the past, she didn’t follow through. I said sure, knowing nothing would come out of it. Then, out of the blue she followed up a week or so after my last appointment via phone. Why would she call when she stopped replying to the majority of my (occasional) emails with progress reports. I don’t even remember the content of the call because I said what she wanted to hear. She wanted me to go away, so I finally have and that last phone call was for her to get her due diligence completed.

Chronic diseases make you a patient some doctors don’t want to deal with. MCAS makes you a bad patient and it made me a bad patient for physical therapy because I continued to have something happen that slowed down my progress – most of 2017. Like a migraine for a week more than once, or 3 weeks of antifungal treatment via PICC line. Or an allergic reaction that left me sick for a week. Or I tried increasing how often I did my physical therapy at home, and it was too much, and my symptoms flared. Nothing is easy. Just once I’d like to be able to do what is supposed to make me better AND have it make me better. All year my physical therapy was one step forward, two steps back, or two steps forward and one large step back. Sometimes one step forward, nothing backwards. As compared to where I was a in January of 2017 I’m better, definitely, but I have plenty of problems and as of yet, no medical professional who wants to take the extra time to understand.

MCAS defined

Writing exercise: Habitual ritual

I completed the first 4 NaNoWriMo themed Coursera classes from Wesleyan earlier this year. They were super beneficial for me. This is one exercise from the course on setting and description. The instructions were to write about a ritual or routine in specific and significant detail in 500 to 750 words. I wrote mine about a specific type of doctor office visit appointment… getting my Xolair shots.

****

You went around twice before you find an empty space. You park your car, turn it off, take a breath and gather yourself, and leave and lock your car. You walk in the vague direction of the door, there’s no clear path between the cars – both parked and moving. It’s bright and a little too hot.

You pull up and park at the curb. Your travel time was less than 40 minutes; you skipped the construction on the highway. Before you leave the car, you take a breathe and gather yourself. From the curb the door to the office is less than a dozen steps. Immediately inside there is the window with sliding glass with a low counter. You nod in greeting, the woman behind the window slides open the small glass door, greets you, and passes you the clip board. You write your name and today’s date on the appropriate spaces and hand the clipboard back. The woman nods at you and you head on back through the door to the right. There’s a decoration of a smiling yellow face on the door which reminds you of decorations in elementary school.

Walking to the back, you pass a medical assistant and he says hi but nothing more, he’s busy. In the infusion center, not all the chairs are full. You never know if your appointment will be in a crowded room or if it’ll be you and the staff.

The head infusion nurse, Lynn, greets you with a smile, like always. She’s busy starting an IV for the young woman in the first chair. You smile, stopping at hi, while she’s with another patient. There are 8 chairs lined up on the right side, spaced enough for room for nurses to administer to their patients. You pick the third from the front. It’s one of the more comfortable dark red chairs. You place your bottle of water and phone on the table, your bag on the floor at your feet, and dig out your novel. You sit down, trying to get comfortable, for now the book is in your lap. The other older nurse, Kate, comes out from the back room where the wide variety of medicines and supplies are stored. The vials, bags, and syringes. This nurse is somewhat reserved but still friendly.

She greets you, “Good morning! Your Xolair is mixing.”

“Hi! Thanks.”

This means your shots are ready in 10 to 15 minutes. The medicine is thick and they don’t mix it until you arrive. In the meantime she brings you a blood pressure cuff, the small battery powered type that goes on your wrist. You attach the cuff around your left wrist and position your arm. The nurse stands ready to write down your vitals.

“124/76. Pulse 89.” She records the numbers as an alarm starts. The IV medicine for the second patient needs attention and the nurse heads to turn off the alarm. The alarms no longer startle you. Lynn is still busy with the same patient.

You sit quietly. The woman in the first chair is young and on oxygen. A thick book sits in her lap. The second patient is older than you, with her chair reclined. Sleeping perhaps? She’s curled up under a brightly colored fleece blanket. The fourth chair – to your right – makes the small child curled between the chairs even smaller. You don’t know how old he is but he doesn’t talk. He appears engrossed in his game on the tablet. It’s one of those educational games meant for kids to practice identifying words or colors and such. His watchful mother is nearby, periodically scrutinizing her phone.

Lynn is walking toward you with 2 syringes. How did you miss her leaving the room? She pulls up the short stool identical to every other doctor’s office and sits down near you. You sit forward in the chair and turn, offering your right arm first, as she pops the cap off syringe number one. The medicine goes into the back of your upper arm. That soft fleshy bit. Even knowing what to expect, the burning pinch is still a surprise. Now the first syringe is empty and she retrieves the second. This one goes in your left arm. You suck air through your teeth and it makes a hissing noise as she slowly pushes the syringe empty. One arm always seems to hurt more than the other.

“Does it hurt?”

“Just a little. Like usual.”

She nods as she finishes. You look at the clock high on the wall. 11:35. You can leave at 12:05. You must wait, in case this time your body decides the good medicine is bad. There’s almost zero risk though. You sit back, the pain in your arms a vague shadow. You open your book.

****

Reading Supplement Labels: What is suitable for vegetarians?

Over the weekend I had an epiphany of sorts. Or I was kicking myself. One of the two. I make sure I buy supplements with allergy statements on them because supplements with fish or shellfish ingredients can make me very sick – sometimes it sneaks up on you too. (I’m not an average healthy person so I rely on supplements.) It turns out I haven’t looked close enough at every single bottle – every brand – that I’ve purchased. I know that I made an easy/simple mistake. The vigilance required when taking supplements and having to deal with food sensitivities/allergies/intolerances is … inhuman? Scary? Overwhelming? Regardless, I’m still having problems resisting kicking myself over being this stupid.  Anyway.

The biggest thing I’ve fallen for is “suitable for vegetarians.” And as an extension of that trying to determine what omitting details means or needing to know if food allergy label requirements for food also apply to supplements.

Here’s two labels in question. Just the backs of the bottles that have the allergy/safe for statements. I was probably tired or brain fogged or sick when searching for the magnesium and calcium supplements in the pictures. I saw the contains no blank words and figured I was fine because minerals. Also, what does hypoallergenic mean when it doesn’t clearly state it’s free of peanut, tree nut, shellfish or fish?

supplement label examples (2)supplement label examples (1)

The following four labels are exactly what I want to see. They either have a statement showing they are free of the top 8 common food allergies or, in the case of the biotin, say suitable for vegans.

supplement label examples (6)supplement label examples (5)supplement label examples (4)supplement label examples (3)

I’ve searched the FDA website now, with multiple keywords and found nothing helpful. (I started with Google.)

I can’t find a definition of vegetarian or what suitable for vegetarians means. There is also suitable for vegans – that’s much clearer.

This is my (/sarcasm) favorite (/sarcasm) result. I had one result when I searched the FDA’s website for “suitable for vegetarians.”

Other search results:

“Questions and Answers on Dietary Supplements”

Guidance for Industry: A Dietary Supplement Labeling Guide

Guidance for Industry: Current Good Manufacturing Practice in Manufacturing, Packaging, Labeling, or Holding Operations for Dietary Supplements; Small Entity Compliance Guide

And the most important one but I couldn’t find anything that says the Food Allergy regulations apply to supplements….

Food Allergens Guidance Documents & Regulatory Information

I gave up and posted on Twitter and tagged a few different FDA accounts. I’m not expecting a reply, but maybe I’ll get lucky. (I’ll update this post if I do get a reply.)

Don’t do what I did. If you have food allergies or any type of food that makes you horribly sick all the time, read every single label, even if it’s the same brand. In fact, read them twice. And don’t trust “suitable for vegetarians” unless they define what a vegetarian eats and doesn’t eat.

Again: Because of my MCAD/S, MS, and other health problems, I need supplements. And the MCAD/S is also why I have to be so careful with supplements. It’s not a question.

Now I really need to get off the computer and go knit while leaning on a heating pad.

The yeast is coming back

For my records, an attempt to stay in control of my brain, and anyone who wants to follow my super exciting life:

My last infusion was August 30, 2017 and yesterday afternoon – September 3, 2017 – symptoms started coming back. Took about 4 days. Last night my fitbit showed less than 10 minutes of deep sleep. I’ve been up to go to the bathroom 5 times in 3 hours? I did eat/drink a few things high in sugar but I didn’t do anything *crazy* …. I wonder if I can manage diflucan despite the red 40 since I managed the mycamine despite the histamine reaction. Clearly the 3 weeks of antifungal infusions were step 1. There’s no other option I can think of and live with at the moment. I’m going to double both my probiotics. I remembered last night when laying awake wishing I could sleep that my doctor recommended increasing the Prescript-Assist probiotics. I also made the connection that the problems I started having after 2-3 weeks of new probiotics was die off. I discovered the term for die off is Herxheimer reaction. I’ve also learned there exists a powder for suspension form of diflucan.

Returning symptoms:

  1. neuropathy
  2. back pain
  3. abdominal pain, bloating, constipation
  4. bladder pain/etc.
  5. insomnia
  6. anxiety and depression (worsened by the insomnia of course)
  7. eye pain (WTF on top of WTF)
  8. oral thrush – coating roof of my mouth too
  9. yeast residue in my belly button (You know because it’s white, pasty and smells sour.)
  10. hot flashes and night sweats, flushing yesterday was probably related too
  11. loss of appetite

I have no idea if any of these symptoms are also Herxheimer reaction but I know I’ve definitely got yeast symptoms. I desperately need to know what’s going on. So I’ll be doubling both of my probiotics today, possibly taking one reglan per day for a while, calling my doctor tomorrow and hopefully not crying, and hope this tension headache doesn’t get worse. I just don’t have the words.

Systemic fungal overgrowth is real

Specifically it’s candida. It’s so much more than a “yeast infection.” I just finished once daily 100 mg mycamine (mifungin) infusions. I did this for three weeks via a PICC line. The last week really did the trick. After two weeks I felt like I was 75% or so there. I compared it to being most of the way through your antibiotics course for an infection. Previously, I was almost permanently fighting oral thrush and the visible thrush symptoms would clear up but multiple symptoms with my throat never would. Finally, I insisted and my immunologist did a throat culture – for fungal. It came back in a week for candida. It really was everywhere. I can’t even imagine the stress this was putting on my gastrointestinal tract.

Side note, getting information on candida overgrowth (on the Internet) is maddening because people have such strong opinions about it.  It also might be worth noting there are multiple antifungal oral options. There was something about every single option – either the active ingredient or an inactive ingredient – that meant it wasn’t possible for me. If you’re looking for information I would recommend limiting your searching to Google Scholar. You might call this post a follow up to my previous post about looking for information on fungal overgrowth. I’m also not particularly high risk, like organ transplant or HIV.

Because of the symptoms that have utterly disappeared after the three weeks of infusions, I can say unequivocally that I’ve had this problem for years. It increased in severity in the past 9-12 months. Based on my research, it’s possible that just having multiple sclerosis increased my risk. (No idea how, but I saw more than one academic journal article mentioning it.) Gastroparesis also increases your risk, but this makes sense considering that food sits longer and has more time to basically ferment in your system. Also, eating gluten free and drinking more milk doesn’t help because there’s more sugars to feed the yeast. I suspect MCAS increased my risk too.

Also, to be clear. This is completely amazing to me. Dealing with the PICC line, the infusions, and the systemic symptom blow up from the mycamine itself – because it caused a mast cell flare up – was ultimately worth it. On top of this I can’t put into words how astounded I am that I dealt with this for so long and this candida was just ON ME AND IN ME AND EVERYWHERE.

So, my symptoms. I think a list might be easiest. Most of these symptoms have disappeared. Yes, I’ll say it again, disappeared. Just my skin alone feels better.

External

1. Itchiness. My scalp would get unbearably itchy if I didn’t wash my hair at least every 2 to 3 days. A thousand times worse if I sweated a lot. My entire body would be itchy if I didn’t shower every 2 days at minimum. I had accepted that my skin was so sensitive to everything that I just needed to shower every night as often as possible. I know this to be true because I also washed my hair significantly less during the infusion treatment because of the PICC line and experienced no negative effects. I would have intense under arm itching occasionally too. 

2. Smell/Odor. My bad breath is gone. (My husband might admit to how bad it was if I prod him some more.) My body odor itself is no longer as strong. I could never figure out why I seemed to smell sour after sweating more or showering less. Maybe like three day old beer? (That is so gross I can’t even begin to figure out which emoji is best.) It was unpleasant for me so I have no idea how it was for people around me. But a gradual change in your body odor is not really something you remember to ask the doctor about.

3. Eczema on my feet. A fungal infection on the heels of your feet and around dead skin does not look like a fungal infection on flat skin. I think the yeast was actually worsening eczema on top of causing other issues.

4. Residue. I don’t know what else to call it. The best example is what happened to my underarms. Some time long ago I realized I had this white pasty looking substance under my arms. My under arms were so sensitive I had to stop shaving. I would trim the hair with a simple battery operated trimmer. There continued to be this residue that looked a lot like built up solid antiperspirant/deodorant. I assumed it was a combination of dead skin and deodorant. It was actually reasonable to assume I was allergic to my deodorant.

There’s other parts of my body that has a similar type of “residue” that’ll I skip the details on. Belly button is probably an obvious one. Come to think of it, it was EVEN MY EARS. Basically, if it’s dark and/or moist there was probably a strange white build up if I didn’t shower/clean regularly. I’ve also just realized that I could have the same build up across my skin if I wasn’t able to do something as simple as rub down the length of my arm with a wash cloth in the shower. (Sorry, that’s a horrible sentence.) So, it was everywhere on my skin and if the area was moist (moister?) then it was worse.

I think that’s a good segue for switching to internal, wouldn’t you say? Some of these symptoms I’m not sure how much the yeast overgrowth contributed and how much is from my chronic diseases.

Internal

5. GI symptoms. I have less gas. I’m wondering if removing the inflammation caused by the yeast overgrowth will effectively reduce the severity of symptoms from my gastroparesis.

6. I couldn’t wear tighter clothing – like yoga pants for more than 10-12 hours. Actual leggings which are slightly tighter was even worse. Let me put it this way: chronic vaginal yeast infections do not have the tell tale white … substance. You get “irritation” instead. I put the word irritation in quotes because it seems like an understatement. More time will tell.

7. Sore throat and pain when swallowing. I would wake up in the middle of the night to pee and have a super painful spot in the back of my throat and it would happen again in the morning. I could lose my voice after lots of talking. I think I was drinking more water to compensate for this too. Sore tongue but you couldn’t see it so doctors didn’t believe me. I think I had a layer over my tongue that you couldn’t see without scraping. There was also the sensation of something at the back of my throat or tongue. It’s not something you can easily ignore. (MS can cause problems swallowing, so how was I to know?)

8. A bad taste in my mouth and a weird change to my saliva. I have a suspicion, that might be confirmed with my next dentist appointment next week, that the yeast was interfering so much so that I was at higher risk for cavities. I had all these tiny little cavities 6 months ago and I don’t drink much that’s carbonated, let alone anything like regular soda. The actual consistency to my saliva was also weird and well, wrong. How would you describe it? It was weird.

9. I think maybe my eyes had issues too. It’s weird to consider, hard to describe, and it wasn’t as severe as other parts of my body.

10. My bladder. I already have chronic symptoms because of MS. If I really was drinking more water that wasn’t helping. I might have less inflammation here too, but more time will tell since I was also on prednisone through the infusions.

11. Clearer sinuses and nasal passage. Over the past few months I’ve noticed an increase in crap in my sinuses. Like I was more congested and actually started using sinus wash more. Anyone who uses sinus wash probably understands why this is significant.

12. I should have less systemic inflammation too. This might lead to improvements in my levels of chronic pain and chronic fatigue. Maybe this will help my MCAS be less likely to flare? My migraines had worsened in severity this year, I was experiencing less but they were lasting longer.

13. INCREASED sense of taste. I can remember wondering why some foods seem so bland. I would also search for stronger flavors. The build up of yeast in my mouth was getting between me and my food. As a specific example, there’s a dark chocolate truffle flavored with bergamot among other things that tastes stronger to me. Food might actually be more enjoyable. More time will tell on that one too. Anyone with major food sensitivities and diet restrictions can best appreciate why this improvement is wonderful.

My symptoms had become so widespread and, well, all consuming, that I have realized some things as I’ve written up this blog post. It’s been a crazy experience.

Finding science on the internet about candida overgrowth is almost impossible

Part 1. (edited 8/12/2017 6:30pm CST)J

You could call this post my first attempt at finding information.  It was semi-successful. After finally convincing my immunologist there’s something there, despite no white patches in my mouth; he did a throat culture. Now that I’ve started antifungal infusions I’d love to find some useful* information about fungal overgrowth.

This is one of the better explanations about candida overgrowth that I found from a not academic journal site. And it still has problems. That led me to academic journal searches. What annoys me the most is the utter lack of sources. So there’s no way to know if anything about the food recommendations is accurate. In general, it’s interesting. I didn’t try the ‘spit test’ but I do know my spit is often thick like even when I’m not dehydrated. So, hmmmm. But anyways.

….. I realized after I hit publish I need to point out that I use interesting and possibly credible and definitely questionable sources or sites as ways to get ideas for more research. I’ve been researching for my own benefit for over a decade and only recently decided I’d start sharing some of the things I find since there’s so much out there on the Internet. For example, because of that source I knew to look out for (credible and proven) essential oil usages. …. And now we continue.

I also found an interesting article discussing that dysmotility and PPI use are independent risk factors for bacterial and/or fungal overgrowth. Causes are interesting and helpful to understand – to a point. You reach a point where you want help, not explanations for why.

The other potential I found is a literature review from 2014, and as a general rule, literature reviews are always at least a tiny bit helpful.** That article is behind a pay wall but all the references are available and it’s almost always better to go to the original source. A lot of the references are behind paywalls as well, or very highly specific studies. How about, The epidemiology of hematogenous candidiasis caused by difference Candida species. And then there’s this one, Candida albicans: a review of its history, taxonomy, epidemiology, virulence attributes, and methods of strain differentiation.

The abstract of this article,

“Candidiasis: predisposing factors, prevention, diagnosis and alternative treatment,” mentions: “In the past two decades, it has been observed an abnormal overgrowth in the gastrointestinal, urinary and respiratory tracts, not only in immunocompromised patients, but also related to nosocomial infections and even in healthy individuals. There is a widely variety of causal factors that contribute to yeast infection which means that candidiasis is a good example of a multifactorial syndrome.” I point that out since it mentions gastrointestinal, urinary, and respiratory. Interesting. Wish I could read that one, but again, f’ing paywall. Side note: Need to check the references from it. See? The references are like a reading list.

This article clears up that candida infections can ‘blow up’ into blood stream infections. I know ‘blow up’ is a horrible choice of words. It also uses the words “in certain groups of vulnerable patients…” so this blood stream infection must be super super rare. Here’s another that mentions bloodstream infections. Candida albicans versus non-albicans bloodstream infections: the comparison of risk factors and outcome. (lots of math in that one)

This one has pictures and focuses on specific regions of the body that are infected. (when you hit that link you won’t see pictures, you actually have to keep reading)

And I didn’t know that treatment options for uncomplicated vulvovaginal candidiasis were so controversial. (Or was in 2011.)

This next one I was super excited to find because it’s available! Effects of plant oils on Candida albicans. It’s super short but it’s easy to read and has results. PDF direct link here.

If you understand, or know someone who understands, bacteria biofilms, then this article might be interesting for you. Again, paywall. I got my hopes up since it talked how Candida is affected by salvia and dietary sugars. I’d really like an answer on the sugar thing. A clear, backed by science answer, with details. DETAILS!

I’ve also found information that says I’m at risk for candida infections just because I have MS. Other risk factors include oral birth control and corticosteroids. My thrush got worse after I was on prednisone a few times this year too.

I’m going to try rinsing*** with a few drops of peppermint oil in water before bed, and when my mouth tastes extra foul. Before this I only knew about tea tree oil. Tea tree oil is also foul, but not as horrible as the flavor of candida.

So far the search has been frustrating. It might be helpful to just look for information on fungal overgrowth but then that’s going to run into all the not science information out there about mold exposure.

*useful. Like based in science and cited

**I have a Master of Science in Applied Sociology. I can write an excellent literature review so I know when I spot a bad one. I also learned, in undergrad, how to identify a source as credible. Not everything on the Internet is true, neither is Santa. If I couldn’t successfully judge a source, I would not have graduated with two degrees.

***Don’t swallow. *snicker*

Fitbit Charge HR v Charge 2

Charge HR on the left and Charge 2 on the right.

So I have technically owned 3 different Charge HRs. First one was a refurb from woot.com that went dead and I just returned it. Other two were from fibit directly. The first one the band started peeling off the electronic head? unit? and the second one still technically works, probably… but it was definitely just ‘going dead’. I was having major problems with battery life and my step count was starting to look, well, wrong. I think the screen tap thing was working half the time too. I did a lot of comparison between the Charge 2 and the Ulta HR and a lot of people seemed to like the Charge 2 better. One of the biggest thing was keeping the hardware button. I like the slim look of the ulta and I also like the different band but I knew I’d get annoyed without the button – eventually.

Charge 2 cable is the longer cable, at least twice as long as the HR cable. The HR is above the Charge 2 in the picture.

First, let’s get one thing out of the way. The thing I don’t like about Fitbits in general is the sizing. They have small, large, and extra large. So technically the large is the medium, but no, it isn’t. My wrist is just big enough to be too big for the small and so the large is too big for me. The band is tightened almost the whole way. Also, for some reason, I need to wear a Fitbit with the face/screen on the inside of my wrist. Otherwise I have this big open area between the band and my wrist on the outside/ulna nerve side. That wasn’t comfortable at all! So it’s an annoyance but I found a reasonable work around.

That being said, a quick Google search told me I was still sticking with the Fitbit because I wanted sleep and heart rate tracking, and I have an Android phone and I already knew the Fitbit app has no major problems with my phone. Beyond the extreme price difference. Fitness trackers have a wide range of prices.

In general, the Charge HR was good. The sleep and heart rate tracking helped me out a lot. Step counting is useful, until it’s not. Based on the step counts on my Charge 2, my HR step counts had lost accuracy. Considerably, on some days. I did return the second Fibit HR with the broken band and receive my last Fitbit HR for free as a replacement. That process was painless.

So the things I didn’t like about the Charge HR:

  1. It would get caught stuck against my arm and the inside charging area and such would dig into my arm and it would hurt.
  2. The feel of the band wasn’t comfortable, especially when ‘dirty’ and it got uglier looking when dirty.
  3. The way the band curled because of how it’s connected to the face/sensor area and the little screws in the back that attracted dirt as soon as you put it on the very first time. Based on how the band also peeled away, it was clearly a design flaw.
  4. Battery life, especially once it started getting old. I was needing to charge the thing like every 3 days and I wasn’t syncing it a lot. I also have quick look turned off.
  5. The way the front/screen are molded/shaped. It was really easy to scuff. Also kind of ugly.
  6. I sweat under it as soon as I was warm.
  7. The charger. Ew the charger. It became very hard to get the charger to snap in place on the fitbit so it would charge correctly. Also the cord is too small.

All in all, I was very happy to upgrade.

This is the Charge 2 in the clamp that holds it for charging. 

And the things the Charge 2 does a lot better than the Charge HR or how everything I didn’t like about the Charge HR was fixed:

  1. Wearability. The band feels different and it moves better. The backside of the Charge 2 doesn’t dig into my arm. Improved from the HR. The Charge 2 also looks a little nicer than the HR, just in general.
  2. I haven’t noticed the band feeling ‘dirty’ and I’ve owned it about a month.
  3. The band doesn’t have the same annoying curl. The curl is still present but since the band can be removed it feels different to me and the difference is better.
  4. Oh the battery life! It lasts at least 5 days? It might last closer to a week when I don’t poke at the app and sync it multiple times a day. You know, that shiny electronic thing where you use it more because it’s new? I’m past that and the battery life is excellent. (I continue to keep quick look turned off because I find it distracting. I tap the screen instead.)
  5. The screen is fabulous. It’s easier to read and see. I can see it outside. It might be a little more resistant to scuffs/scratches but I can’t say for sure.
  6. The band doesn’t stick quite the same and in the month I’ve owned it I think I’ve taken the fitbit off twice because it was too hot? I live in TX but don’t spend a lot of time outside so YMMV.
  7. The new charger! The new charge is awesome! It ‘plugs in’ only one way but that’s fairly standard. The clip is easier to use and there’s a hole in the side for the button. It’s also easier to reboot and you won’t accidentally unplug the tracker when trying to reboot it. I think it’s also easier to use if you have any range of motion, gripping, or strength problems in your hands.

The things that are great about the Charge 2:

  1. The new sleep cycle data. It shows you deep sleep, light sleep, REM sleep, and awake time. It’s been enlightening. If I feel extra crappy physically I didn’t get enough deep sleep. If I feel completely dead mentally it’s because I didn’t get enough time in REM. It uses heart rate data and will present the basic data if it can’t use heart rate data.
  2. I feel like the heart rate might be more accurate but I haven’t had much chance yet to compare it with readings at doctor offices.
  3. The band is definitely much more comfortable. Also, worth noting, the band is removable so you have options. I haven’t spend the money on a second band yet. (It’s like Apple accessories.) Also worth noting, I’ve noticed, for lack of a better word, twisting, where the band connects on either side. It doesn’t seem like a big problem and might be more of an issue because of the size of the tracker compared to the size of my wrist? If it ends up an issue I’ll contact Fibit.
  4. It reminds you to move at the end of each hour if you haven’t hit the magical 250 steps per hour (or whatever it is). I still haven’t remembered to try out the guided breathing/relaxation thing.
  5. I haven’t mentioned the exercise specific stuff because I don’t exercise enough for my fitbit to be helpful in that regard.
  6. The hardware button is larger and easier to press. It’s also easier to reboot.

Two more pictures to compare the trackers:

The Charge 2 is on the top in this picture, HR on the bottom. Good comparison of the button on the side.


Back side of the trackers. The HR is on the top, Charge 2 on the bottom.

I definitely recommend the Charge 2 if you’re interested in sleep tracking and or heart rate tracking. Also, from my Google searches it’s one of the cheaper trackers out there if you have these requirements, or was 6 weeks ago. If you have an Android phone, definitely check phone support on the different tracker apps too. I looked at a Garmon tracker, I think, but my Android phone was like the only one not listed and besides – they actually listed out Android phones which was a red flag for me. Fitbit also offers an extra warranty now. Reminded me of AppleCare so I went with it because AppleCare is useful.

My biggest problem with the Charge 2 so far is that it seems like every time the app is updated I need to reboot the tracker and my phone to continue to get the hourly reminders to move. Or, there’s something else wrong? I haven’t figured it out yet. If it continues I’ll contact Fitbit.

Basically, I’m very happy I upgraded from the Charge HR to the Charge 2 and I’m content that I stayed with Fitbit. My problem with the sizing offered is minor. Also, the new sleep stages/data are awesome.

Chronic life: June and July 2017 doctor visits

I actually had a bit of a break from appointments in June because a good friend visited but that’s not the point of this point. The point of the post is which medical professionals did I see.

June was definitely a quiet month. I’m still going to the chiropractor weekly. Both the adjustments and the acupuncture help. Actually saw the chiropractor five times in the month of June. Then I had physical therapy twice. I’m glad I can manage that twice a week now. I received my Xolair and that was a happy day. And then beyond that I just had a counseling session – which made me realize how damn busy I’ve been in the past 6 to 8 weeks – and I had my – what do they call it? – “women’s health exam” and had hormone levels checked too.

That’s only a total eleven appointments in the month of June! Ranging from 25 minutes to a little over an hour. Each appointment is 50-60 minutes in the car, round trip.

And now we’re in July.

This Friday I get my next Xolair shots and see the chiropractor. I’ve got 3 or 4 chiropractor appointments scheduled. I might cancel one depending on how I feel. I only have one physical therapy session scheduled so far. I might wait 3 weeks for the next one. I’ve got a physical scheduled with my new-ish internist and I’ll have to go on another day to get the labs done since I have to fast. Beyond that, there’s three different specialists and then a hand sonogram.

So let’s see, that’s a total of eleven appointments again. And that doesn’t count the dermatologist visit I probably need to schedule and another round of Xolair if I can really (fucking finally) get it scheduled for 3 weeks now.

All of this while somehow managing to game, go to the movies, and make it to knitting group. And four and a half days of migraines. Seriously, about 86 hours, when I look back at my migraines app. Just 4 different migraines though.

I wish I got paid for my job instead of having to pay other people. Or maybe an assistant to keep track of my schedule at the very least? I’m a professional dammit!

Gorgeous Lilacs close up

There’s a few things you end up missing when you move everything and go live in another state. After moving from PA and living in TX for over a decade I still miss the spring flowers of the Northeastern US…

Thanks to Summer for sharing these pictures. She periodically posts more flower pictures on her Instagram (and cats, and life, and stuff).

I thought it would be nice to throw the pictures up here based on Instagram’s limitations. Especially since I’ve had “a day” and these are so pretty! <3

Please don’t share these pictures without giving credit to Summer via her Instagram.

Dear Aetna, you’re still horrible

I just got off the phone with Aetna Specialty Pharmacy and I’ve determined that sometimes incompetence (or ignorance) is like an onion.

It’s also relevant to point out that when you mention Aetna on Twitter you get an auto response from their “social media team” to contact them at this email and blah blah blah. I finally said fuck it and responded the last time. They didn’t resolve anything but it was an interesting exercise? Or something. Anyways. After this fiasco with Aetna to get my tecfidera filled, I decided to email that same social media email again. I’m not holding my breath. They should fucking give me refunds. (By the way, the email in attachments they send back to you can only be opened in Microsoft IE or Edge but they don’t tell you that.)

I’m going to share the email, because it’s the Internet and nothing ever goes away.

It’s taken me two weeks to get my tecfidera scheduled for delivery and that is only because I’ve been proactive. A less educated patient or customer would have possibly run out of their medicine.

My doctor’s office did prior authorization first. I think I received the notice around 4/22. Then the prior authorization approval that I got in the mail told me I could get the tecfidera filled at *any* pharmacy. It said any. So I called Aetna RX Home delivery and they set it up. Cigna did tecfidera under the speciality pharmacy but I figured Aetna must be different since they are different with so many other things.

Then I heard nothing. I contacted my doctor’s office about the prescription at least twice between then and now (5/8). Today my doctor’s office called Aetna again and thankfully she gave me the number she called. She said the prescription should be ready but she had no idea if I was supposed to call.

After calling Aetna Specialty pharmacy I learned this:

1. Aetna RX home delivery processed the order 4/27.
2. Then it was transferred to Aetna Speciality 4/28.
3. Aetna Speciality started processing it 5/3 but the prior authorization wasn’t found until 5/5.
4. Apparently there was something else wrong? because the prescription wasn’t ready until my doctor’s office called on 5/8.
5. The Aetna Specialty rep told me I should have been called sometime today (5/8).

Why was I notified that I could fill my prescription for Tecfidera at any pharmacy?

Why did the Aetna RX Home delivery rep not know that the pharmacy she works for could not process the prescription?

WHY was I not contacted at any point in this mess? I should have been contacted by BOTH Aetna RX Home delivery AND Aetna Specialty Pharmacy.

This is ridiculous and bad for my health.

I’m sure nothing will come of this email either.

So to review, Aetna sent me prior authorization approval at around 4/22 (I don’t want to go dig up the letter) and I didn’t have my prescription actually ready and scheduled for delivery until today on 5/8.

I’m a professional patient. I know how to navigate much of the (United States) healthcare system. I understand a lot about doctor offices, pharmacies, and insurance EOBs (explanation of benefits). I know that Aetna’s pharmacy website is worse than any of the websites my doctors have set up. I know that Aetna doesn’t believe in communicating with their customers. They also apparently don’t believe in communicating with anyone outside their department or division either.

Also, it’s fucking hilarious that Aetna requires their call center reps to end with Thank you for choosing Aetna because it’s a constant reminder that I didn’t have a choice.

In short, if you have to deal with getting prescriptions from Aetna via any kind of mail delivery, make sure your doctor gets you a prescription for XANAX too.