A Very Unfortunate Blogging Hiatus

Drawing of arm with red dots showing where pain is

Ever wonder how someone with so many arm injuries managed to do a post with a ton of drawings? The answer is, it really came back to bite me in the ass.

Besides overdoing the drawing, I was typing on my iPad because my voice software wasn’t working well. (It’s old.)

And I scrunched myself over in decidedly non-ergonomic positions, slacked off on my strengthening exercises, and forgot to ice after extended activity. I forget my body when I’m feeling creative.

Anyway, you get the idea. My arm is toast. I’m wearing a carpal tunnel brace and two tendinitis braces. I look like I have a robot arm. I also, once again, have a close personal relationship with my ice pack collection. And I’m doing these special exercises called nerve glides.

My arm with a carpal tunnel brace and two tendinitis braces

My Robot Arm (I was going for Cylon from Battlestar Galactica but didn’t quite get the look down.)

I’m running around town doing acupuncture, massage, and hand therapy, and tomorrow I’m getting a treatment called prolotherapy, which involves injecting an injured tendon or ligament with an irritant, allowing it to heal more strongly around the injection site.

Prolotherapy helped twice before. If it doesn’t help now I’m going to try cold laser.

I ordered a new computer complete with an ergonomic mouse and the latest version of Dragon NaturallySpeaking, my voice recognition software. I’m just waiting for the ergonomic mouse to arrive to set it up.

It’s too upsetting to think that I will have to abandon this blog. Blogging made me feel like I was actually doing something other than constantly going to the doctor. What I might do are text-only posts when my new voice software comes, or maybe do very simple drawings like the one above. I never used those services that provide free photos for bloggers, so if you can recommend any good ones, that might help. I’m not sure whether looking for good photos will be hard on my arms.

I know that some of you are occupational therapists or know about physical therapy (cough cough, ahem, Jenny from The Lyme Road, Victoria from Lemons ‘n’ Lyme, and I may have forgotten someone). And if anyone else, therapist or not, has any recommendations, please let me know.

I know I owe a few text-only guest posts, so those might happen once I get my new software.

It might take me days, weeks, or months to heal. I’m not sure, but please wish me luck and send me healing thoughts.

I hope everyone had a good Hanukkah and Christmas.

If Santa Claus Had Brain Fog

Santa forgets Christmas and needs elf to remind him

If Santa Claus had brain fog, he might have problems with dates.

He might lose important stuff.

Santa loses the sleigh and elf reassures him

He might forget everyone’s names.

Santa forgets reindeers' names

Brain fog might interfere with Santa’s innate sense of direction, forcing him to rely on technology.

Santa asks Siri for directions but his phone is dead

He might get confused about the order of gift distribution.

Santa stands on rooftop wondering if he did the house already

With brain fog, you can make a list and check it twice, thrice, or two hundred times and still forget who is naughty and who is nice.

Santa stands on a rooftop and wonders if the kid who lives in the house gets a Playstation or a lump of coal

Santa stands on the rooftop and decides to leave both the PlayStation and the coal

Brain fog can make you lose stuff, and it can also make you THINK you lost stuff.

Santa thinks he lost his hat but it's in his hand

Possible diagnoses of Santa’s brain fog:

1) Lyme disease?

Two reindeer complain that no one ever checks them for ticks

Actually, I don’t know anything about reindeer, but puffins are hosts for a tick called Ixodes uriae that carries a European strain of Lyme, borrelia garinii. There was a study done in the Faroe Islands near the Arctic Circle. Puffins also live at the North Pole. Hmm.

2) Has Santa had full thyroid testing including Free T3, Reverse T3, and thyroid antibodies? Brain fog is a symptom of thyroid disease. Also, like many thyroid patients, Santa struggles to lose weight.

Santa complains about inability to lose weight

3) Does Santa have gut dysbiosis?

picture of Santa's belly and possible gut dysbiosis

4) Santa’s job exposes him to lots of pollution and nasty toxic chemicals. Another reason for brain fog.

Santa and sleigh fly over factory smokestack

5) (Insert your diagnosis of Santa.) Well, I just listed several causes of brain fog, but I’m probably leaving some out because I have brain fog myself. Please feel free to add anything I’ve missed that could apply to Santa Claus. No medical qualifications needed to diagnose imaginary beings.

Happy Holidays, and I wish everyone many pain-free or at least low-symptom days.

As The Stomach Turns: My Lyme Treatment Update

Woman in store asks me if I'm pregnant and I say I'm just bloated

Note: This post has a TMI Warning.

So, I’ve been treating for Lyme for almost 11 months, but I haven’t posted much about my treatment because I was slowly improving, not having horrific side effects, and I didn’t want to jinx things. In my experience, the minute I say, “Well, I’m happy (random thing) never happened,” then (random thing) happens.” Case in point: A few years ago, when I was at my sickest, I was trying to do this “gratitudes” exercise. At that point I didn’t know what was wrong with me, and one of my “gratitudes” was “at least I don’t have Lyme disease.” You can see how that turned out.

But treatment-wise, all was going well until my LLMD switched one of my oral antibiotics and added some supplements, and my digestive system staged the Great Gastrointestinal Rebellion of 2014.

I worry that I will be trapped in a bathroom forever, and my last sight onnearth will be a toilet paper roll

Even my own toilet hated me.

Toilet tells me, "I'm really sick of dealing with your shit"

I had to temporarily stop my antibiotics and supplements and take aloe gel, which was OK, and l-glutamine, which worked pretty well. And my doctor quadrupled my dose of saccharomyces boulardii, a probiotic that helps prevent antibiotic-associated stomach disasters as well as candida. I’m now taking so many probiotics that, if I were not taking antibiotics, the probiotics could probably build their own city in my gut.

What a probioitc city might look like: acidophilus apartments, bifido building, saccharomyces stadium

The problem with taking a ton of things (which many spoonies will relate to) is that you have no idea what did you in. Was it the switch to cefuroxime, the supposedly easily tolerated antibiotic, from doxycycline, which many say is a stomach-destroyer but which I handle just fine (my body is always backwards)? Was it the different form of magnesium, magnesium glycinate, which is supposed to be easier on the stomach? Was it the serrapeptase, enzymes produced by silkworms, for the biofilm form of Lyme?

For non-Lyme afflicted readers: The biofilm form is when the bacteria become embedded in a nasty slime matrix that protects them from the medicines you’re taking to kill them. You want to break biofilms open and keep them from forming in the first place. (“Nasty slime matrix” sounds very scientific, doesn’t it?)

I now take boluoke, or lumbrokinase, which is a collection of enzymes made from earthworms, for biofilms. It’s supposed to be stronger than serrapeptase. The whole business of it being derived from earthworms is a bit unfortunate, as I had a pathological fear of all things creepy-crawly long before my life was ruined by a tick. We’re on the first floor and get centipedes from the yard, and God, do I scream.

I see a centipede, scream, and ask why it needs to have so many disgusting legs. It's not running a marathon, right?

J and I call centipedes “horrible brushes,” because they resemble brushes and they’re, well, horrible-looking. I’m sure they have a valuable function in nature and I should pick them up and gently place them outside. This has never happened. I squish all bugs. Maybe the tick bit me as part of a collective insect revenge plot.

There were several positive Lyme-related developments.

1) I joined the Chronic Diseases Book Group, which I wrote about here. I want to learn as much as possible.

2) My mother finally believes in chronic Lyme.

Mother claims I got Lyme because I petted dogs against her wishes

OK, there is that blame thing, but it’s definitely a big deal for a dysfunctional family. Social Security believed I was disabled before my father did.

3) A dear friend has severe, progressive multiple sclerosis, none of the medications were helping, and she uses a wheelchair. Since Lyme can mimic MS, I asked her if she would consider getting an IGeneX test (the most accurate test). Her neurologist told her that this was a ridiculous idea and that there was no way she could possibly have Lyme. He practically laughed in her face, even though New York is one of the most Lyme-endemic states in the country and she had been camping many times. Long story short … you know what I’m going to say, right? She tested positive for Lyme and one coinfection. She is now seeing an LLMD.

4) I went to the New York Times Lyme protest in September, which was meant to protest the lack of media coverage of Lyme.

Picture of New York Times Lyme protest

I didn’t take this picture. Someone who is actually a good photographer took this picture.

I was lucky enough to meet some great activists. And they kindly stood still while I struggled to get a decent shot.

Lyme activists

I did take this picture! See below for info.

Far left: David Skidmore, creator of the amazing Lyme Loonies cartoon series and my favorite chronic illness cartoonist. (The series name is a satirical spin on something a retiring CDC official said about Lyme patients.) You can also find Lyme Loonies on Facebook and Twitter.
Second from left: Jenny Rush, who created Lymethriving.com. Lyme Thriving is a support organization that provides conference calls and retreats to help patients deal with the emotional and spiritual stuggles that come with chronic illness. Some of the calls also have medical themes, such as regaining gut health. Here’s the Facebook and Twitter info.
Near right: Karen Mascuch Ravitz, a Lyme activist and patient advocate
Far right: Carl Nelke, a Lyme-literate, ILADS-trained therapist (LCSW). Here’s his Facebook info.

Last year there was no way I could have taken public transportation to and from a protest, stood for almost two hours, and felt energetic enough to meet new people. I have to remind myself of these things when I feel I haven’t made progress.

OK, if you made it through all that, please enjoy this video made by Tori Piskin, one of my favorite chronic illness comedians. In the video she entertainingly demonstrates why it is a bad idea to do your IV Lyme treatment in NYC’s Grand Central Station. She has a great YouTube series called Sorry, Having a Lyme Day.

That title kind of sums things up for me.

The Hypothyroid Lymie Book Club

I stand in front of a pile of books I need to read to become an educated patient (plus websites, ebooks, etc.)

Because of the above situation, I recently joined the Chronic Disease Book Group on goodreads.com.

I nicknamed the group the Hypothyroid Lymie Book Club because almost everything on the current list relates to Lyme, thyroid disease, or related topics such as grain-free diets. The order of reading isn’t set up yet, but these are the books we have so far. (I put in Amazon links so you can read reviews; I have no affiliation with Amazon.)

1) Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz — We’re almost done with this book. If you can read only one book about Lyme, I recommend this one. It’s amazing. If you’re a new Lymie, this will get you up to speed really, really fast. It’s long and the print is tiny (not a great thing for Lyme patients), but if you remember even a quarter of what you read, you’ll really have expanded your knowledge—so much so that you can go on a forum or to a doctor’s appointment and not need to start everything with “this may be a stupid question, but …”
If you have had Lyme for a while and have done a lot of research, there’s so much info in this book you’ll probably still learn a lot.
I recommend reading it in actual book format. I tried reading it on my phone, and it was hopeless. This is a book you need to be able to flip through and mark up.
2) Cure Unknown by Pamela Weintraub — A Lyme classic that explains the history of the controversy around the disease.
3) Why Do I Still Have Symptoms When My Lab Tests Are Normal? by Dr. Datis Kharrazian — A well-known book about the causes and treatment of Hashimoto’s thyroiditis (the autoimmune disease that causes most cases of hypothyroidism), with an in-depth analysis of the effects of gluten on autoimmunity.
4) The Root Cause of Hashimoto’s by Izabella Wentz — The title says it all. I took a quick look when it arrived, and I know it will be really helpful.
5) Grain Brain: The Surprising Truth About Wheat, Carbs, and Sugar, Your Brain’s Silent Killers by David Perlmutter— Again, I think the title says it all; the book is about the link between carbs and brain conditions such as dementia and ADHD. This book and the previous two are on thyroid expert blogger Hypothyroid Mom’s recommended book list.
6) Wheat Belly: Lose the Wheat, Lose the Weight, and Find Your Way Back to Health by William Davis. I’m doing the Autoimmune Paleo diet (well, mostly), and hopefully this book and the one before it will guarantee I never cheat. Emphasis on “hopefully.”
7) Why Isn’t My Brain Working? by Dr. Datis Kharrazian — A highly recommended book about—what else—brain fog.

I feel there’s so much I need to know and understand about my various illnesses before I can get myself into a state of semi-functionality. I hope to be able to spend my weeks doing something other than going to acupuncture, physical therapy, and doctors’ appointments. Maybe I won’t have a fabulous, fancy second career, but I’d like to work from home or get an online master’s degree. It would be nice to have that level of recovery.

I’m terrible at making schedules for myself, and need to be given “homework” when it comes to health books. I will happily blast through a novel or memoir in three days (make that one day for YA science fiction such as The Hunger Games), but health books require studying, underlining, and the making of little notes in the margins. I forget most things anyway, but I do retain a vague, shadowy knowledge of what I read. My addled brain requires me to write down page numbers with important stuff and reread as much as possible.

The group has a reading schedule, excellent chapter summaries written by the moderator, and discussions. Since it is a book group for the chronically ill and brain-fogged, it’s OK to ask for extensions. (I have already asked for several, and we’re only on the first book.) The moderator is extremely nice and helpful.

To join the group go here. (You’ll need to join goodreads.com if you are not already a member.)

For people who aren’t familiar with goodreads.com, it’s a free social networking site for bookworms. You can share lists of books you’ve read or want to read, see what friends are reading, get recommendations, write and read reviews, and join book groups. You register with an email and password, or sign in with Facebook, Twitter, Amazon, or Google. (I prefer using an email and password. I’m extremely paranoid about hackers and keep separate passwords for every site squirreled away in a little notebook that I will probably lose someday, causing a nervous breakdown. But I digress.)

By the way, I have to say my thyroid really approves of my joining the book group. Well, sort of.

Thyroid berates me for not reading fast enough and watching videos from the Thyroid Summit
With foggy clouds around my head, I say that a little less brain fog would be helpful
My thyroid gives me a guilt trip for suggesting that it caused brain fog and tells me it tries very hard
My thyroid names all the other conditions that cause brain fog like Lyme and bartonella
Thyroid continues to tell me about all my other conditions, but tells me not to stress out because stress is bad for it

Anyway, if you check out the book group, I promise my Evil Thyroid will keep quiet and not bother you.

Evil Thyroid is wearing witch costume for Halloween and saying "Trick or Treat"

Yeah, I don’t remember swallowing a tiny hat and broom … oh well.

By the way, I can’t seem to get my “Follow Me on Pinterest” button to work as I’m somewhat tech-illiterate, but click here if you want to see all the articles, recipes, and other stuff I have pinned on Pinterest (some of you will find your blog posts there too).

Can you think of one or more books or articles that have really helped you either to learn about your illness or to deal with the emotional fallout from being chronically ill? If books are not your thing, what are your go-to websites, forums, and Facebook pages? Please share in the comments section.

Happy Halloween!

Shit Doctors Say

Doctors can say the most awful things to chronic pain patients.

In 2009 I started to have severe pain, weakness, and fatigue. I felt like I’d been run over by a truck. One of the first doctors I saw was an infectious disease specialist who tested me for Lyme disease. The test was positive, even by CDC criteria, but for some reason she decided the result wasn’t significant. I was clueless about what the test meant, and continued to see specialist after specialist, trying to figure out what was wrong. I didn’t make it to a Lyme-literate doctor until the end of 2013.

I think I saw about 40 doctors in total, mostly rheumatologists, pain management specialists, and psychiatrists.

Why psychiatrists? Chronic pain patients are often referred to psychiatrists when MDs can’t be bothered to figure out what’s really going on.

And despite their knowledge of emotions, psychiatrists say some of the most horrible things.

Here are some of the worst and strangest things I heard:

1) Psychiatrist, female:

Psychiatrist tells me I dress badly

I called this doctor “psychiatrist Barbie” because of her obvious familiarity with plastic surgery, pricey-looking highlights, designer suits, and four-inch heels. She had so much Botox her forehead didn’t move at ALL, and her lips were suspiciously puffy.

Her comment was just bizarre. Is there such a thing as “chronic illness dress-for-success”?! A doctor’s appointment is not a job interview, right?

At the time, I was in so much pain it was an achievement to get dressed at all, and I had to wear sneakers because my back hurt so much. And in general, I think people dress casually to go to the doctor, unless they’re coming from work and they work in, say, a white-shoe law firm.

2) “You radiate female energy. You’re all woman.” — Psychiatrist, male, supposed “pain specialist.” OK, I was wearing the exact same jeans and sneakers as with doctor No. 1, but she said I was too frumpy to be taken seriously and he sounded like he was hitting on me. Ugh. Also, five minutes into the appointment, he promised to help me break my addiction to opiate painkillers. The problem? I don’t take opiate painkillers. I’ve used them after surgeries, but they mess with my stomach. He just didn’t read my chart.

3) “You’re using your boyfriend as a crutch so you can act like a cripple.” — This was also the “pain psychiatrist” from No. 2., a real winner. My boyfriend has helped with cooking, grocery shopping, and household tasks since I became ill. He is a naturally helpful person and I feel lucky he lives with me; it isn’t about “using” anyone. And of course this doctor, despite having lots of disabled patients, had to use the ableist slur “a cripple.” Hello, disability rights awareness?

4) The nose-picking psychiatrist:

Doctor picks nose and asks me how many milligrams I want

After removing his finger from the depths of his nostril, he handed me the prescription he had been writing. I used my elbow to drag it into my purse so I wouldn’t have to touch it.

I should mention that he was in Best Doctors in New YorkNever trust Best Doctors in New York.

5) Pain management specialist, male:

Doctor tells me people on disability have more pain and so he can't write me a disability letter

Another one from Best Doctors in New York.

6) “I do 500 exercises a day to stay out of pain.” — Pain management specialist, female. Wow, only 500? That sounds realistic.

7) “Everything looks just beautiful down there!” — Gynecologist, male. In this case, there was a language barrier, and I really wanted to believe that by “beautiful” he meant “without severe growths” or something similar. And maybe he did. But I later learned that another patient sued him for sexual harassment.

8) Psychiatrist, male:

Doctor tells me I have pain because I haven't dealt with my issues

Correct, doctor, but the issues I hadn’t dealt with were undiagnosed Lyme and worsening thyroid disease.

9) “You need to forget about your pain and get on with life.” — Pain management doctor, male. Uh, how to do that, exactly?

10) “I’m not going to massage your hand. I don’t do hand massages. I want to last in this profession.” — Occupational therapist and certified hand therapist. I was seeing her for my carpal tunnel and other repetitive strain injuries. The whole idea of going to a hand therapist is to get massages to relieve your pain (also to get rehab exercises, but the therapist should use pain-relief techniques in conjunction with exercises). Maybe this woman didn’t get the memo, because she only gave exercises. She wanted to keep from getting repetitive strain injury herself as a result of giving massages; this does happen to therapists. Still, she was protecting herself at the expense of her patients.

11) Rheumatologist, female:

Doctor tells me my test are normal and my mind is creating my pain

She was the one who referred me to the “pain psychiatrist” in No. 2 and No. 3. She was in Best Doctors in New York too, of course. I used to have two cats, and eventually I ripped up Best Doctors in New York and used it to line the litter box.

12) “Americans are very spoiled.” — Acupuncturist, female. True in many cases, but do I need to hear it when I’m laying on a table with needles all over my body? Granted, the woman grew up in Mao’s China during the Cultural Revolution, but there’s a time and place for every comment.

13) “You have a few little positives on the Western blot, but I don’t think it means anything.” — the famous infectious diseases doctor. I wrote about this in my Lyme disease story. The “few little positives” were the 39kda and 41kda bands, which make a Lyme test positive even by CDC criteria. However, in New York, one of the very worst states for Lyme, you can have a test untouched by the political controversy surrounding Lyme, a test that all parties would consider positive, and still go untreated. The doctor didn’t even give me the few weeks of antibiotics that the Infectious Diseases Society of America (IDSA) claims are enough to cure Lyme, despite the existence of 273 studies showing the Lyme bacteria can persist in the body.

14) “Wow! You blew up like the Michelin man!” — Endocrinologist, male. This actually happened before I got Lyme. The doctor took me off thyroid medicine and I gained 60 pounds. It took me years to lose those pounds, even when I was back on the right dose. I think this story might need its own post.

If you have a doctor comment you want to vent about (and so many of us have gotten awful remarks), please share in the comments section (unless sharing the experience will retraumatize you, which I totally get!). I’ve had a while to process all these experiences, so writing about them (and especially making unflattering drawings of doctors) is therapeutic for me. I think the therapeutic power of sarcasm is underrated.

In the meantime, I wish everyone only pleasant, helpful medical encounters!

Guest post for the Hypothyroid Mom: ADD or Hashimoto’s Brain Fog?

I was very honored to be asked to do a guest post for the Hypothyroid Mom. If you are not familiar with this wonderful website, it is an incredible resource for all those who suffer with hypothyroidism and Hashimoto’s thyroiditis (the autoimmune disease that is the number one cause of hypothyroidism).

Anyway, before I had brain fog from Lyme disease, I had brain fog from Hashimoto’s thyroiditis. (Yes, it’s VERY foggy in here.) At one point I was even given ADD medication for my brain fog. That didn’t go so well. You can read my super-foggy story at the Hypothyroid Mom’s site.

image

Also, the Hashimoto’s Institute, an excellent and informative series of free (yay, free) online presentations about Hashimoto’s thyroiditis, is going on this week. There will be 28 presentations by top thyroid experts, and replays for each presentation. So far, I’m learning plenty (even with my brain fog), and it’s only day two.

Click here to check it out.

The Myth of “Hypoallergenic”

Product gives me a rash although says hypoallergenic

The word “hypoallergenic,” like the word “natural,” is not regulated.

And while we’re at it, no actual dermatologists are required to test products labeled “dermatologist-tested.”

That’s right, for marketing purposes, companies can claim anything is “hypoallergenic.” According to the FDA website, “There are no Federal standards or definitions that govern the use of the term ‘hypoallergenic.’ The term means whatever a particular company wants it to mean.”

And it goes without saying that the word “hypoallergenic” does not take into account specific allergies.

Now, when people with allergies and sensitivities see a product that has hypoallergenic, fragrance-free, paraben-free, etc., stamped all over its bottle and/or website and the manufacturer does not disclose the FULL list of ingredients (including inactive ingredients), it normally sets off a very important but little-known part of the brain:

The bullshit detector in the brain

My bullshit detector was clearly broken the other day when I was at hand therapy (I have repetitive-strain injury). I was getting treatment with a TENS machine, which sends an electrical current into your muscles in order to ease tension and soothe pain. (It sounds scary and Frankenstein-esque but feels amazing.)

But this time, the electrodes stopped working. They didn’t have new ones, so the therapist offered to put conduction gel on my back to make the old electrodes work better.

I never allowed her to do that before because of my allergic skin. Who knows what’s in that gel? “No, it only contains water and salt,” the therapist said.

People who don’t have allergies or sensitivities can really, truly believe that a sticky, chemical-looking gel that increases electrical conduction could only contain water and salt.

Anyway, she convinced me to try JUST A LITTLE TINY BIT THIS ONE TIME. Non-allergic people can act as though I’m worrying too much, being neurotic, or being “negative.” Usually, I don’t fall for it, and I try to raise awareness of allergies. This time, I was weak. I wanted to use the TENS unit, my neck muscles felt like cement, and she convinced me that no one had ever reacted to the product.

I got a rash. Surprise. Not. I’m always that one person in 100 who reacts. I hate being constantly vigliant, but my immune system has its own agenda.

I Googled all over the place and I couldn’t find the ingredients for this product. Not on the company’s site and not on any other site.

Aquasonic gel: What's in there?

Aquasonic gel: What’s in there?

What I did find was one report to the FDA, from a physical therapist who was allergic to methylparaben and had reacted to this product. Now, I try to avoid parabens as much as possible because of their endocrine-disrupting properties and persistence in tissue, but I’m not actually allergic to them, at least not on my last test. False negatives do happen on patch tests, and once you start developing allergies, you often develop new ones. Still, I have one prescription cream that has methylparaben, and I don’t react to it.

I wondered if the company was using a formaldehyde releaser. I am very allergic to one of these. Formaldehyde releasers preserve products by slowly releasing formaldehyde into the products; the formaldehyde ends up on your skin. Yes, it is the same formaldehyde used to embalm dead people. Also, formaldehyde is a carcinogen, although the cosmetics industry insists that the trace amounts in cosmetics are fine. The formaldehyde releaser I’m allergic to is called “diazolidinyl urea” and is often found in shampoos, cleansers, conditioners, creams, hair stylers, and other personal care products.

But the product website had “no formaldehyde” on it too. Fact is, I’ll never know what was in that product, because the company didn’t practice full disclosure. Instead, it wrote on the website: “Unique ‘can’t be copied’ formula is bacteriostatic, non-sensitizing and non-irritating.”

I’m quite happy this formula can’t be copied, since it was definitely not “non-irritating.” I could have called or emailed the company, but in this case it was less work just to not use the product again.

So, the moral of the story? If a company makes all sorts of claims and doesn’t disclose its ingredients, it’s usually hiding some unsavory chemical.

To find a dermatologist who does patch testing, click here.

And as for the word “natural,” for an excellent and hilarious explanation of just how meaningless that word is, check out this post (with videos) from Seriously “Sensitive” to Pollution.

Here’s one video:

Miss Diagnoses’s Favorite DIY Skincare Products, Part Two: Green Tea and Apple Cider Vinegar Toner

Me as mad scientist

I have combination skin, so I always liked the squeaky-clean-face feeling you get from using toner. But after being diagnosed with allergic contact dermatitis, rosacea, Lyme disease, and a genetic defect that weakens my ability to remove toxins, I figured I couldn’t use toner anymore. Commercial brands are packed with irritating ingredients such as alcohol and witch hazel, as well as toxins and allergens such as fragrance chemicals and propylene glycol.* I resigned myself to oiliness, pores like moon craters, and breakouts.

Then I discovered this concoction. There are recipes for it all over the Internet, because green tea’s anti-inflammatory and astringent properties really help battle redness, oiliness, and blemishes. Green tea is also a great antioxidant, and the extract form is often found in antiaging creams. (I don’t know whether the tea concentration in a toner is sufficient to fight wrinkles—it can’t hurt, though.)

As for apple cider vinegar, it contains malic acid, which has antimicrobial and antifungal properties. ACV is good for restoring the skin’s naturally acidic pH and calming breakout-prone skin. It seems to have helped my seborrheic dermatitis, a condition associated with a species of yeast, malassezia, that lives on the skin (lovely, I know). And according to various sites, Scarlett Johansson washes her face with it, making it a Bona Fide Celebrity Beauty Secret. Oh boy!

The recipe I use is very simple, and it’s based on the recipe from The Nourished Life. The original uses about three parts of tea to one part vinegar, but because of my ridiculously sensitive skin, I use about 10 parts of tea to one part vinegar.

About the tea: I used to make this with regular supermarket teas. Then I read this scary article shared by Elizabeth of E.M. and M.E. (a great ME/CFIDS blog that’s also helpful for people doing the low-histamine Autoimmune Paleo diet). The article’s author talks about, among other things, pesticides and GMOs in popular tea brands and plastics in teabags that may start to break down in hot water. Oh, great!

I started using looseleaf organic tea from my local health food store or Rishi brand (which is expensive, but I drink a lot of green tea as well as make this toner). I also bought a tea infuser. There are a ton of metal tea infusers out there, but if you are allergic to nickel like I am, there are all-glass ones like this too. If you use bagged teas, the author recommends certified organic, GMO-free brands such as Numi. I have used Haiku as well. The author also recommended Traditional Medicinals, but I couldn’t find a plain green tea in their line. I prefer plain green teas, such as sencha, for this toner. Flavors like mint, lemon, lemongrass, and jasmine are great for drinking, but for putting on your face? Not sure about that.

You will need:

  • Organic looseleaf plain green tea or 1–2 teabags
  • Tea infuser or mug
  • Distilled water (Distilled water goes through a rigorous filtration process to remove contaminants; spring water is sometimes just repackaged tap water, and it can contain lovely things like arsenic and coliform bacteria.)
  • Apple cider vinegar with the “mother” (the nasty-looking stuff at the bottom) such as Braggs
  • Small glass spray bottle or lidded bottle (see below). Whole Foods and some health food stores carry the spray bottles, or you can order them from Amazon. Unfortunately Amazon does not seem to sell them singly.
  • Organic cotton pads
Spray bottles for green tea toner

The type of spray bottle I like—I bought the one on the left from Amazon and the one on the right from Whole Foods

Heat distilled water until it starts to boil and brew a very strong batch of tea. Chill in the refrigerator.

Add a small amount of apple cider vinegar to the bottle. I usually pour in the vinegar until there’s about 1/8–1/4 of an inch at the bottom, but if your skin is less sensitive you might be able to handle more. Or you could start with a little and build up.

Pour the chilled green tea into the bottle until the bottle is filled. You’re done!

I spritz it on my face and neck and then blot the excess with a cotton pad. I used to make it with a regular lidded bottle and apply it with cotton like regular toner, but the spritzing thing is very refreshing in the summer.

A note about how long to keep it: I have seen everything from “leave it in a cool dark place for a month” to “don’t keep tea for more than one day and leave it in the refrigerator.” I make a new batch every other day and keep it in the refrigerator. This seems to work best for me, as I am not using enough apple-cider vinegar to really preserve it. (And having things growing in it seems less than optimal.)

Variations:

Now for more DIY: I have recipes on my Pinterest boards and The Allergista has some more. My blog buddy ZenThyroid has a fantastic coconut-oil based moisturizer recipe. Also, blogs like The Nourished Life, Crunchy Betty, Wellness Mama, One Good Thing by Jillee, and Art and Practice have a lot of great recipes. (Note: A lot of DIY recipes have essential oils, which can be irritating. I leave them out all the time without altering the quality of the product.)

*Propylene glycol is an organic alcohol often used as a skin-conditioning agent and humectant. It’s associated with irritant and allergic contact dermatitis, immune system toxicity, and contact urticaria (hives); sensitization effects can occur at concentrations as low as two percent. Topical application to highly injured skin (such as in burn creams), has sometimes been linked to kidney failure, among other things. Sources: Environmental Working Group, Centers for Disease Control, and Ruth Winter, A Consumer’s Dictionary of Cosmetic Ingredients.

Armour Thyroid: A Love/Hate Story

Thyroid lectures me about not writing more about it

Well, I’ve been taking Armour for a few months now, and it’s been a mixed bag. I’m trying to sort out the positives and the negatives before I see the doctor this week for new tests.

After the first five or so weeks at 120 mg, the Armour was obviously not working, because my TSH was 13. I know the TSH is not the most important number, but 13? (For non-thyroid patients, the range is .3-3.0, or .5-5.0 if the doctor is old school.) The endocrinologist upped the dose to 150 mg.

At my next appointment, my TSH was 5.83 and my Free T3 and Free T4 were beginning to slowly creep up, so he upped the dose again to 180 mg.

I thought he was raising the dose too infrequently, but then I read this interesting site, ThyroPhoenix, posted by my blog buddy Jenny from The Lyme Road. The site suggests raising doses no more than every four to six weeks to properly gauge the effects, which is what he had been doing.

My endocrinologist is a conventional Western doctor, but he seems to be on all the patients’ preferred thyroid doctor lists, possibly because he is progressive for an endocrinologist. He doesn’t overemphasize the TSH test and he LOVES LOVES Armour. The catch? He does not love the other types of natural dessicated thyroid, such as WP Thyroid and Nature-throid. And I’m wondering if one of those might be better for me. Many patients like them better than Armour. I especially like that WP Thyroid has only two fillers.

I might have to switch doctors to try either of these if I can’t talk him into switching. I’m not good with change. I’ve stayed with practitioners way too long just to avoid starting over with someone new and having to tell my whole sordid illness story yet again.

My LLMD, who is an integrative doctor, suggested a compounded T3/T4 formulation with a probiotic or Vitamin C as the filler. He is also on several preferred doctor lists, but he doesn’t use Nature-throid or WP Thyroid either. I wasn’t sure about taking compounded thyroid, because I had taken compounded T3 with Synthroid in the past and still inexplicably had low T3. Might have been the wrong dose or a problem with the pharmacy, but still … weird. And I’m still not sure what to do. (Hey, after all, confusion is a hypothyroidism symptom.)

So this has been my Armour experience:

Cold Intolerance: Better. In fact, I think I’m starting to get HEAT intolerance, which is usually my first sign that I need to lower the dose. Except I don’t know whether it’s heat intolerance or if it’s that it’s just been really fucking hot this week and I’m responding normally by producing actual sweat. I spent the last few years wearing a jacket when everyone else was wearing a sundress, so my body is … confused.

Weight: I gained four pounds. Bad. But oddly, my face is MUCH less swollen. Seriously, I didn’t realize how swollen it was before. (I was on Synthroid for years.) I just thought my jawline was disappearing. Nope. I even have a slightly pointy chin now.

Hair Loss (and Hair Gain): My hair has definitely gotten thicker, and less is falling out. Oh, and I have actual outer eyebrows again! Yay, because drawing them in with pencil looked really stupid (although, for fellow green beauty product enthusiasts, this great brow pencil by Gabriel Cosmetics has a pretty clean ingredient profile.)

Brain fog: Slightly improved. My brain fog is an odd hypothyroidism/Lyme disease hybrid, but at least now I can finish a whole sentence without losing my train of thought.

Weird Not-Quite-a-Palpitation Feeling: At the beginning of each dosage increase, I would notice a feeling of tightness in my chest soon after I took the pills. I knew that this could be a sign of being overmedicated. I also read it could be a symptom of adrenal issues. After a few weeks at each new dose, the feeling would go away. I decided to ask for the 24-hour saliva cortisol test for my adrenals. And unfortunately, it is still sitting in the box. I had a lot of stressful events in June, including finding out that my stove had been leaking a small amount of natural gas for YEARS, and I couldn’t deal with doing the adrenal test OR my heavy metals test. Is procrastination a hypothyroidism symptom too?

24-hour adrenal saliva cortisol test

The Saliva Cortisol Test: Not Helpful for Diagnosis if You Don’t Take It Out of the Bag

Depression: A little better.

Random Craziness Factor: This is the big problem. During the last few months, I have had more arguments than I have had in the last few YEARS. I mean, I am pissed off. Well, nowadays, first I have a major hissy fit, and then I get this weepy, maudlin, why-can’t-everyone-just-love-one-another feeling. These mood swings also seem to peak at the beginning of each dosage change and then level off. Could it be too much T3, or could it be my adrenals? Right now, things are manageable, but I worry that if he raises the dose again, I might become a sterotypical obnoxious New Yorker, starting fights with people in the grocery store.

Argument in fancy grocery store

Seriously, I have a friend who almost was run over by a shopping cart in our local food coop … the culprit was a woman making a mad dash for the last box of quinoa elbow macaroni.

When I first started Armour and had that scary TSH of 13, I read that fillers, specifically cellulose in Armour, can interfere with absorption. I read that even though Armour is not meant to be taken sublingually, some patients reported feeling better doing so … one woman on a forum said she put the pill under her tongue an hour before she fully woke up and then let it dissolve. So I decided to see if that would work.

Armour Thyroid creates blob on teeth

Oops. Chewing it and using a pill crusher didn’t help either.

On the plus side, during this process, I learned some useful techniques for dealing with doctors. Specifically, my few remaining Western doctors, such as the endo. The first is from my blog buddy Chronic Rants. You start by asking for the least controversial test first and then ask for the most alternative-ish test last. It definitely helps.

The second is the symptoms-first approach, which I got from this Mary Shomon article. For example, instead of saying “I think I might have hypothyroidism,” you would say something like, “My hair is falling out, I’ve gained a bunch of weight, and my skin is dry—do YOU think it could be related to my thyroid?” This way, you look like the patient who defers to the doctor’s godlike medical expertise rather than the Patient Who Googles Every Single Damned Thing. Even if you are the latter, which I am, which we all probably are, I think it helps to pretend to be the former. Even some alternative docs seem to be threatened by patients who are frequent medical Googlers.

I actually took the symptoms-first approach one step further and did the whole thing on the computer. I handed the endo a typed sheet with the questions listed after the symptom lists (as in “I have a, b, and c … is it possible it could be d”?). I barely said anything—just handed him the piece of paper like it was a high-school book report. I figured that in medical school he must have learned by memorizing lists of symptoms, so why not? It worked! He bent over his desk and started madly circling tests to run.

Now I type out all my questions before all my appointments. (Well, I can’t type because of the RSI, but I use dictation software.) Doctors seem to take typed lists of questions more seriously than written lists. (Possibly the high-school book report idea again? )

I used to be that thyroid patient who took Synthroid and believed it was working because the blood tests were in range, even though I had carpal tunnel, depression, dry skin, and inattentive-type ADD, plus it took me forever to lose weight and I was always freezing.

Anyway, now I am making up for lost time, because I have more than 30 new thyroid-related videos, five thyroid books, three Lyme books, one anatomy book, one cell biology book, a basic chemistry book, and several books about the Paleo diet to read. Well, except for the brain fog, memory problems, and that procrastination issue. I should be done with all the viewing/reading by … 2016?

More thyroidic updates to come (and perhaps a book review). If anyone has experience switching from Armour to Nature-throid or WP Thyroid or from Armour to compounded thyroid, please share!

Miss Diagnoses’s Favorite DIY Skincare Products, Part One: Foot and Body Scrubs

Me as mad scientist

Ah yes, sandal season is definitely here. This means that in addition to finding not-completely-hideous-yet-highly supportive summer footwear, I have to address the gross, dry “lizard-skin” situation on the bottom of my feet. (Sorry for TMI … dry skin is a well-known annoyance of hypothyroidism.)

What do you do if you have allergic contact dermatitis and react to preservatives in various exfoliating scrubby products, or if you have Lyme, fibromyalgia or another environmental illness, methylation problems, etc., and want to avoid chemicals your body won’t be able to detox?

It turns out the Internet has more recipes for making your own skincare and haircare products than it has cat pictures. And that’s just on Pinterest. If you are not sensitive to the original ingredients, you’re good. (A lot of recipes include essential oils, which many react to, but I usually leave them out and it doesn’t alter the results.)

Many contact allergies are caused by preservatives, and DIY products don’t have any. This means you need to use up products very quickly and make smaller amounts. But products that contain water are the most likely to grow bacteria, and these scrubs contain only oils and salts. Since salts have preservative properties, you can keep these a bit longer.

And all the the recipes I use are very easy and quick to make, because I have zero energy! Plus I’m very busy, what with my exciting, whirlwind life of medical appointments.

Salt Scrubs

1) Sea Salt, Himalayan Salt, and Olive Oil

1/4 cup coarse sea salt*
1/4 cup coarse Himalayan salt*
organic olive oil

*I like to buy coarser salts and run them quickly through a food processor (one or two pulses) to get the grain size I want, because I mainly use scrubs on my feet and therefore need coarser scrubs. If you want to skip the food processing or use the scrubs on more sensitive areas, try fine-grained salts. And remember, avoid salt mill bottles if you don’t want to spend two days waiting for enough salt to come out to even make the damned thing!

Process salts to desired size. Mix. Add olive oil to cover and leave a bit extra for a more moisturizing scrub.

Sea-salt-and-Himalayan-salt foot-and-body-scrub

2) Sea Salt, Epsom Salt, and Olive Oil

1/4 cup sea salt, coarse
1/8 cup Epsom salt
organic olive oil

Process the sea salt with one or two pulses (or use fine salt). Add the Epsom salt. Add olive oil to cover with about 1/8 inch extra on top.

This scrub is a bit lighter than the first one. I use it on my legs before shaving. For an even finer scrub, you can just mix 1/2 cup Epsom salt with olive oil.

For variations on this recipe, check out Wellness Mama.

3) Himalayan Salt and Coconut Oil

6 tbsp. coarse Himalayan salt, processed
4 tbsp. coconut oil*

*If you hate the smell of coconut, you might want to try Now Naturals. It isn’t organic, but I have never had a reaction to it. You can get it in health food stores or online (see link above).

Process salt and mix with oil. This one is definitely a harsher scrub that is best for feet.

Himalyan-salt-and-coconut-oil foot-and-body scrub

Here is a variation that adds mint leaves.

You can play with different quantities of salts and oils until your scrubs have the consistency you want. Some people use table salt, but I have had the best results with Himalayan salt, Epsom salt, and sea salt (I like this kind—great in both scrubs and recipes!).

I store my scrubs in glass bottles since reading this scary article about non-BPA plastics, which was shared by my blog buddy Linda at Seriously “Sensitive” to Pollution.

Scrubs in glass containers

I also like to use a spoon or scooper thingie to avoid contaminating the scrub with bacteria from my hand. (Do I sound like a germaphobe? I am! It’s good to be somewhat OCD when you make home beauty products. Trust me.)

I have additional recipes on my Pinterest boards, The Allergista has some more, and blogs like Living the Nourished Life, Wellness Mama and One Good Thing by Jillee have a ton of great stuff.

If you have any favorite recipes, please post the links! And happy scrubbing!