Tuesday, May 10, 2016

This Unicorn Princess Has Good News, Also Tsums Too Much

The past week has been lots of routine doctor visits (Tomorrow I have to RUN. On a TREADMILL. NoooOOOOoooo), frantic last minute cosplay crafting (which will never be done in time for MegaCon, but hey, it's fun to try, right?), visits with friends we don't see enough, and of course, stressing about how to fit it all into my incredibly tight schedule of trying to sleep, joking about bad cakes, and Tsum Tsum-ing.

Have I mentioned I made the mistake of downloading BOTH Disney Tsum Tsum *and* Magic Kingdom on my phone last week, and am now a Disney zombot (zombie robot, duh) who hears fairy swishes and chirpy chipmunk voices in her sleep?


John finally pointed out that my feverish poking fits while playing this game are probably not helping my insomnia at night. The adrenaline rush is real, peeps.

Then there's this thing:

TAP ALL THE THINGS.

This one is more relaxing, at least, but for the first 10 minutes I was like, "How does anyone find this addicting? You just tap on check marks!"

[Cut to 3 days later when I'm obsessively opening the app every 15 minutes to tap on check marks.]


Getting back to my doctor stuff, I have good news regarding my Hashimoto's I want to crow about, so STAND BACK:

Ahem hem hem.

[steps up on chair]

[crowing] MY ANTIBODIES ARE STILL DROPPING, AND (here's the best part) I DID IT WITHOUT GIVING UP GLUUUUUTEN!!!

I know that's going to ruffle a lot of feathers out there, but after being lectured by yet another doctor last week about how I had to go GF  - even though all of my tests for gluten sensitivity/allergies were negative, including the rare IgG Antibody test, and even though I did a full month trial and felt zero improvement - it was incredibly satisfying to see said doctor's eyebrows shoot up at my last test results.

My antibodies have steadily decreased with every test since I was first diagnosed with Hashi's, and as I told the doctor - much to his displeasure - I have gluten with every single meal. (MMMM GLUTENY GLUTEN.) My antibodies are down to 136. The goal is zero, of course, but I started around 200 - and keep in mind many Hashi's sufferers have antibodies in the thousands, so I'm one of the fortunate souls who caught it early.

(For those who haven't had to read a bunch of books on this stuff: the antibodies I'm talking about are the things my own body is using to attack my thyroid tissue. Which is why we want zero. And also what makes Hashi's an autoimmune disease.)

Since I was massively deficient in vitamin D when I was first diagnosed a year and a half ago, and a vitamin D deficiency can actually trigger Hashimotos, I believe my silver bullet has been the D drops. Plus maybe the Selenium and other supplements I'm taking.

Anyway, new Doc finally grudgingly admitted that 20% of Hashi's folks maybe *don't* have to go gluten-free, and I was all:


But in a super lady-like manner. (Did I mention I was wearing my rainbow glitter shoes?)

I'm still struggling with energy levels and other less-fun stuff, but we're tweaking some meds and working on it, so there's always hope. I like hope. Hope is good.

One final happy thing: I wore said glitter shoes out to an indie craft show last weekend, and I got more compliments on them than I've ever had on anything ever, possibly including my own wedding. Vendors were literally standing up from behind their tables to watch my feet go by. Then this hair color lady came over and put (temporary) glittery purple and teal streaks in my hair, and I felt like a freaking unicorn princess. It was glorious.

And no, you don't get pics. You just got awkward Jen pics last post! Besides, this:



Slothilda is my spirit animal.


 Happy Tuesday, y'all. Now if you'll excuse me, I have to go tap some check marks.

38 comments:

  1. Yes, Slothilda is my patronus, too. <3 And congrats, Jen!!

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  2. I have had Hashi's for 30 years and not once has anyone ever mentioned gluten - she writes while noshing a piece of day old pizza.

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    1. Wow, really? Maybe it's because I run in the more alternative medicine/naturopath circles. The few books I've read all advocate GF, too. (There is definitely some basis for it, just not necessarily for everyone.)

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  3. The selfie cycle is so me. The only time a selfie actually makes it onto any of my social media accounts is if one of my kids happens to be in it. They make the picture better. Also, my teenage daughters are more adept at holding the phone to take the picture than I am. Congratulations on the improved antibodies!

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  4. I've been obsessed with the Tsum Tsum app for many moons. Right now, I'm frantically collecting money to try to get the limited Star Wars tsums.

    I also had the Magic Kingdoms app for several weeks before quitting cold turkey with this latest update, because of underhandedness on the part of the developer (increasing difficulties with the update - it's already hard and tedious enough!!).

    Congrats on lowering antibodies and getting to keep the joys of gluten in your life! ;)

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  5. Way to slay those antibodies!!

    Now I'm headcanon-ing Vitamin D knights wearing rainbow glitter high-tops on rainbow colored Selenium ponies hunting down snarling, drooling, evil antibodies with glowing green eyes through the immune system jungle.

    Fueled entirely by gluten power, of course.

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    1. YAAAAS. I feel like I should commission this art now.

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  6. Same with my hashi's, gluten free didn't help at all and just made me grumpy. #mmmgluten

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  7. What doctors are you seeing?! It's been a while since I did adult medicine, to be fair, but there is no evidence that a gluten free diet is necessary in the >95% of Hashimoto thyroiditis patients who don't have comorbid celiac disease. I can't find a single peer-reviewed publication nor a single management guideline suggesting the routine avoidance of gluten. It is not recommended by the AACE nor the ATA. In conclusion, keep on with your delicious gluten and a clear conscience.

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    1. Yay more for my side! :D I'm seeing naturopath MDs, and also reading books like Root Cause for Hashimoto's, plus various online support groups - all of which state EVERYONE with Hashi's should be GF. Harrumph.

      They claim molecular mimicry - ie, your body confuses your thyroid tissue for gluten, since the 2 are ostensibly similar - and therefore cutting gluten will reduce antibodies. But I'm adverse to ANY one-size-fits-all approach of medicine, so folks should always do their own research & testing.

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    2. Not knocking naturopaths (it was an excellent one who finally put a stop to years of recurring UTIs), but I think gluten/dairy/sugar make up the trifecta of things that most naturopaths have on their naughty list (although the naturopath I saw actually said I was good with glutens, but I think she's a rare breed).

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  8. Tsum Tsum is the best! But why is yours in Japanese? Mine is in English.

    And I totally get the colored hair making you feel like a unicorn princess. My hot pink hair makes me feel pretty awesome, especially when all the little girls and little old ladies stop me to compliment me on it.

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    1. Oops, I just grabbed a screen shot online - didn't even notice the Japanese! Ha!

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  9. Selfie cycle. XD Go you! Rock it girl.

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  10. So totally psyched for you Jen!

    Maureen

    P.S. It was great to see you in Pittsburgh!

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  11. Hashi's for like five years. The first endo I went to was all GF or die, wouldn't listen and kept upping doses instead, and treated me like a mental patient. Went to my DO and he changed my meds, listened to my concerns which led to discovery of serious vitamin deficiencies (!), and finally was able to live relatively normal. Still struggle with stuff occasionally, but vast improvement!

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  12. Glad to hear the good news! :-) Must...try...to...resist...shiny...apps...doh! /downloadsthem

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  13. brilliant news, Jen!!! Glute away!!

    ...now that sounds just weird....

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  14. YEAH for dropping antibodies!!!!!!! So, so glad to hear that Jen. Good on you for sticking to your guns, listening to your body, but also following other regimens and taking pills and such. Wow! And, whew!
    I don't want to hear or know about a game I can download to my device that I can be playing for hours on end. Nope -- don't need that. :-)
    Maureen S

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  15. Tsum tsum is the best, I love it! It's been usurped recently by SailorMoon Drops though. I am so addicted!
    The selfie thing, 100% me also. :P

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  16. Speaking of addictive apps, have you seen Neko Atsume yet? The English name is Kitty Collector and that's all you do: collect cats. You put out food and toys in your backyard and check back as often as you like to see what cats are visiting your yard. It is ridiculously cute and easy to play!

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  17. My daughter was diagnosed with Hashimoto's a little less than a year ago, and the only mention we've gotten of celiac was that she needed to be tested for it, because it was sometimes comorbid. She was negative, so that was that. Of course, nobody's said anything about antibodies either, but then 1) we're not seeing a naturopath, 2) the doctor's biggest concern seems to be getting her levothyroxin levels right, and 3) her thyroid's probably toast already -- we had chalked up her symptoms to being oddness of puberty, and when we finally took her to the pediatrician, who ran tests, her TSH level turned out to be 100 times normal, and she was still seriously hypothyroid (yeah, the pediatrician freaked out just a little bit -- made sure we saw a pediatric endocrinologist THE NEXT DAY). Since the endocrinologist did mention keeping an eye out for other autoimmune symptoms, maybe we should be looking into this whole antibody thing.... Oh, and seconding the recommendation for Neko Atsume -- VERY cute, and not necessarily time consuming. (The kitties won't come when you're watching!)

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  18. Yippie, freaking skippie! So thrilled to hear your body is reacting positively and your antibodies are dropping. Keep doing what you are doing. Rock those glitter shoes and hair highlights - they are part of your feel good medicine and support your monster slaying swords. Please don't tell me anymore about a highly addictive, squee-worthy game.

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  19. Congrats on the lower antibodies! Go Unicorn Princess Jen!!!

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  20. All the gluteny glutens!!! We are a gluten free house, youngest has celiac, did you know that celiac can cause extreme shortness? I will sometimes buy a tiny loaf of fresh bread from the bakery and eat it while out, running errands, because glutenny glutens are wonderful!

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  21. That's fantastic news Jen! So glad to hear it. This post made me laugh out loud, at work. My co-workers now know I'm crazy when they only suspected it before :D

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  22. Huzzah that your antibodies are down! Huzzah huzzah! I've been dealing with hyperthyroidism for the past 4 years, and seeing those low numbers is *such* a good feeling!

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  23. Excellent news! I don't know how anyone can quit bread. I mean seriously.
    I LOVE Tsum Tsums so much that I downloaded the international version (the one in English) and then did a root bypass to be able to download the Japanese version, which is quite awesome. And I also have been playing Disney Magic Kingdoms since day 1 and although I've curbed my addiction, I still play everyday. But I also now have the new Kingdom Hearts on my phone. Don't download it if you don't want another addiction. Seriously. Its fun though. :)

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  24. I love Kitty Collector (and am too lazy ATM to look up the other name). In the way of Disney games, have you seen Magical Dice?? It's essentially Monopoly done Disney style (multiple boards, with The Haunted Mansion playing the role of Jail on one board!), but you collect, level up, and play the game with the most *adorable* Disney costumes! It's almost a chibi style: http://www.senpaigamer.com/sites/default/files/news/iphone/2016/04/04-disney-magical-dice-3.jpg - please forgive the Japanese, this is not my screenshot.

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  25. Love, Love, LOVE tsum tsum! And now the Star Wars event is live so...yeah. Not going to be getting anything done any time soon. lol

    If anyone wants to add me here's my QR code : https://www.dropbox.com/s/uklzzwvrkfbfrei/Photo%20May%2011%2C%2012%2057%2058%20PM.png?dl=0

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  26. So happy to hear your antibodies levels are dropping and you still get to eat all the yummy gluten-y goodness! Good on you for sticking to your guns and getting the doc to admit that gluten-free isn't always necessary. Hooray for hope!!! And hooray for sparkly shoes and unicorn princesses! You deserve all the happiness you can find!

    And btw, I certainly did NOT need to know about more cute apps that I will surely download this evening and get addicted to. :P

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  27. Thank you for sharing your adventures in "Hashi Hell". Glad you antibodies are falling. (For me it was Selenium that did the trick, everybody has to navigate protocols for their own body.) I look at all the cool stuff you do and it gives me hope I'm going to get to do more fun stuff too! (I get support from www.stopthethyroidmadness.com too.)

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  28. Wonderful news, Jen! It's amazing how often mental health is linked to physical health. As for gluten, my daughter and I tried the gluten free route for a month (her for abdominal migraines/ADD, me for ADHD and moral support), and were utterly thrilled when it didn't help us one bit. I know it's absolutely the right thing for some people, but I'm all for knowing what's right for you. Besides, we really like bread. And pizza. And pasta. And chicken noodle soup.

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  29. Yay, Jen! Great news on the dropping antibody level! Hope your treadmill run today wasn't too awful.

    KW

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  30. Congrats on your antibody levels! I got mine under control without giving up gluten as well. Meanwhile one of my cousins who also has Hashi has tried going GF to control it and his levels have done nothing but get worse. No advice on the fatigue/motivation; even with numbers that make my doctor happy, I still struggle with that.

    Your bright happiness-inducing shoes remind me of the electric blue plastic Skechers I wore all through college. I miss those shoes all the time and they gave me <3 eyes but they finally fell apart.

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  31. Great news Jen!!!! And wow, that graphic is so me! I almost never take selfies and the few I do take, I don't normally post anywhere, lol!!

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  32. Congrats on the dropping antibodies!!!! Crow away! I'm glad you were able to not give up gluten. Keep up the good work! *hug!*

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  33. Aw man... now I'm addicted to TsumTsum... thanks a lot, Jen! What's your line id so we can add you as a friend?

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