"What is WRONG With You?"

The quest for answers continues.

I have not been quite "myself" for some time now. Sometimes it's little things. For instance, right now I can't seem to type more than a couple of letters without making a mistake.

Let me give you an expample I will type this without looking at ti and without seeing if i have made any mistakes. II'm so uset to typing an backspacing that mith ith not be able to stop myself form a;lstocorrecting as I type  Yes, autocorrecing is part of what i co natuarally but not every other workd lik this would recire.


...If you think this is just "normal", we'll just have to agree to disagree. I have never been the best at typing, but I can usually type fairly fast with only a few mistakes and auto corrections as I go. After my first round of steroids I found myself being able to type "normally" again. That sounds like a little thing, but it's only one example.

Other examples...word finding. I struggle to find the next word in my sentences. Again, a fairly little thing. But I have found myself being quieter than usual (GASP) sometimes simply because I can't find my next words. That is NOT fun for someone who likes to talk as much as I do!! It's almost like a stutter but instead of stammering on letters it's whole words that won't come out of my mouth (or I come up with wrong words that don't make any sense).

There is a little test you can do to assess how well your frontal lobe is functioning. The frontal lobe is responsible for (among other things) your thoughts, reasoning, and behavior. I had Dwayne give me the test the other day. I passed all but the word finding part.

Do me a favor. Stop reading and set a timer for 60 seconds. Press start and say as many words as you can that begin with the letter S. (Surnames, proper nouns and variations of the same word do not count. So you can't use play and playbill. (What, you didn't think I was going to give you extra S words did you?!) Go ahead, do it now. Leave me a comment to tell me how many words you came up with before you keep reading. Go ahead, I'll wait.

(Play theme from Jeopardy here.) do do do do do do do, do do do do DO dodododododo, do do do do do do do, DO, da do do do do do

How many did you get? I got SIX! And "six" was not one of my words. I re-did the test with the letter M and got...SIX again! I did the test with the letter P the next day and got NINE. Dwayne and Daisy both got 12 in the first 15 seconds! I was thinking of words like "fence" ("s" sound in it and I was looking at our fence), and for M I came up with the word "mizzy-wiggle". I don't know why that one didn't count?

I have headaches almost every day. I am EXTREMELY fatigued at least 1/2 the time. Dwayne and I walked about a block yesterday and I was out of breath. I tried to walk with Daisy the other day and had to tell her to slow down because I literally could NOT keep up with her. I am a long distance triathlete. I've completed two Ironmans, 2 half Ironmans, three 50Ks, 2 stand-alone marathons, and countless "shorter" events, not to mention the training I have done.

Okay...I heard it. SOMEONE reading this just said to themselves "well, maybe you are just tired/overtrained/burned out?" I can assure you I am not overtrained or burned out. I can also assure you I am indeed tired. But it's an unnatural kind of tired, unrelated to activity. Another example, Daisy was trying to take a picture of a prom dress the other day and asked me to hold it up for her. I had to put this flimsy piece of material on the rack because I didn't have the strength to hold it up!! I was lifting heavy weights just a couple of months ago. I LIKE to be active. I LIKE LOVE to run trails and to ride my bike and swim. Okay, I don't LOVE to swim, but I do like it. I don't like not being physically able to do those things. And, it's NOT a matter of sucking it up and just doing it. I'm not lazy, I'm clinically fatigued. It's unrelenting and is not relieved by rest.

So...what's wrong with me? The neurologist says Hashimoto's Encephalopathy. Hashimoto's is an autoimmune condition in which my body makes antibodies that attack my thyroid. In rare cases those antibodies begin to attack the brain as well. The symptoms I've mentioned aren't the only ones I've had and the ones I've had aren't nearly as bad as some people with HE report.

I went to a new doctor Thursday. He's an integrative functional medicine doctor. He agrees I have a steroid responsive encephalopathy. Encephalopathy means a disease in which the functioning of the brain is affected by some agent or condition (such as viral infection or toxins in the blood). He said it's clear I have an encephalopathy that responded to the best anti-inflammatory out there, but he questions whether or not it was caused by Hashimoto's antibodies.

Why does that matter? Well...if it's the antibodies and I focus solely on bringing those down and keeping them down* but that isn't the cause then I haven't solved the bigger issue. (*To be clear, it's highly debated whether or not you can bring thyroid antibodies down and I won't go into it here but I'm of the belief that it is possible to do that.) Because he questions that notion, he is doing a myriad of other tests. He took 10 vials of blood and I have to do a test for metal toxins that requires collecting my urine over 24 hours and sending a sample to a lab for analysis. (GROSS)

I'll have some preliminary results from him in about 3-4 weeks, but the metal testing won't come back for another 4 weeks after that so I have a follow up in 7 weeks with him. In the mean time I'll get my next treatment of steroids next week, and then my third treatment a month later.

Funny story about the doctor visit. Dwayne told the good doctor he'd pay extra if he would tell me my trouble is because of the cat!! The doctor obviously shares in the lack of love for the feline variety of pet because he obliged by taking an extra vial of blood for another test (toxoplasmosis). If that were to come back positive I will have to investigate our bank accounts for a suspicious payment!!

Come on now. What's not to love about this guy!?

Thanks for stopping in. :D

Day THIRTY Is Here!!

Today is my Day 30 in my "Whole 30"! (And my Day 10 for my "FaceLess10"*) So...what have I learned? What has changed? What hasn't changed? What do I do now?

First, I think the "FaceLess10" was a lot harder than the Whole 30. In case you don't know what I'm talking about...I decided on day 20 of Whole 30 that I would spend the next 10 days without FaceBook in my life! (GASP) I realized I was on it WAY more than I needed to be. I found myself checking my newsfeed every few minutes as if the world would stop if I didn't find out what my FaceBook friends were posting throughout the day. Once I committed to being off FB, I found myself playing more iPhone games (Candy Crush, FreeCell, Churchill Solitaire...need I go on? ...don't judge me, I'll bet you have your own ways of killing time). So, I stopped those as well!! Ten whole days. That's bigger news than changing my diet as far as I'm concerned!

I found I had MUCH more time to read. Sadly I also found some new ways to waste time in a day (Real Wives of Dallas is a real show...who watches that stuff? People who aren't on FaceBook or playing iPhone games of course!) When I found myself "killing time" I stopped and asked what a better use of those precious minutes would be. Sometimes that meant I took a nap! Mid-day naps are glorious! I can't say I got a lot more real work done than before, but at least I felt like I was doing more with the day and this time really highlighted how much time I fritter away doing "nothing".


What I didn't eat on Whole 30

There is a set protocol for Whole 30-no dairy, grains/pseudo grains, no sugars or sweeteners of ANY KIND, no legumes. I also took out eggs and 99% of anything processed at all. I didn't modify as much as I probably "should" have because there are some additional restrictions that would have made the last 30 days "Autoimmune Protocol" compliant, but I figured being 100% Whole30 strict for the full 30 days was going to be enough, and it was. AIP takes out nightshades (tomatoes, potatoes and peppers), quite a few spices (ie cumin, coriander, and pepper of any kind) as well as nuts and seeds of any kind. While I didn't eat a lot of the AIP foods, I did have some things some of the time.  I also know I was "contaminated" at least once with butter at Smashburger.

What did I learn?

Well....not a ton except that it's EASY to not eat certain foods! Seriously. I went to a party Sunday and ate a tiny bit of guacamole on celery and didn't eat the rest and I didn't feel deprived. I didn't eat gluten free carrot cake and...well, I did get a bit sad in the moment, but I'm not sad now. That moment of want FADES pretty darn fast when I am resolved to NOT eat something. In the moment it feels tough to say no, but that no was decided long before I got to the moment of having to say it so it wasn't as hard as it might have been if I hadn't made up my mind in advance. So my take-away--decide before you have to be in the moment.

What has changed?

Well...I'm not faced with having to make the call in the moment. I will NOT eat gluten. Period. I am not willing to say I'll never eat it again because I will eat Mark's donuts again and they will be worth it. But I might not ever think other gluten is worth it for me ever again. (More on this later.) I know I will eat sugar again, but my hope is that I will be able to say "wow that (fill in the blank) is just too rich!" and push said food away and not eat it (something I don't think I've EVER said/done before!).

What has not changed (much)?

Whole 30 specifically says to NOT weigh yourself at all. Well, I didn't listen to them. I did weigh, pretty much every day. And...my weight didn't change much at all. I went down a couple of pounds, back up a couple and back down a couple all month long. Well, now that I'm looking at my Garmin stats, the exact change is that I'm down 8 pounds from where I was 30 days ago. That's a little surprising...and that's exactly why you aren't supposed to weigh every day! But I have to say tomorrow I might be up a couple again, and I started a little high compared to what's "normal" for me, so that 8 isn't as impressive as it sounds. But, I also have to say I'm pleased with where I am right now all things considered.

What do I do now?

There is a set protocol for reintroductions. But, I have to face facts. I already KNOW dairy and eggs do not work in my body. I already KNOW sugar turns me into a demon. I already know gluten pokes holes in my gut. Why would I eat any of that EVER again?

The trouble is that I also KNOW something I still causing my body to react. I'm not sure what it is. There are times I eat a meal and my hands swell up, my head hurts, my sinuses feel like they are going to explode, and the scale pops up a couple of pounds the next day. (And it's obvious where those pounds are because my lower abdomen tries to imply I'm about 6 months pregnant!)

So... I have invested in a fancy food diary. I got it last week although I haven't actually started using it but that's the plan for the next 30 days. Dwayne has been saying for years "If you would just keep a food diary you could figure out what it is that gives you trouble". The problem is that MANY foods give me trouble. The other problem is that I am NOT good at "connect the dots" when it comes to stuff like this. Food intolerances can show up three days after you eat the offending food! And, complicating it even more, there are food combinations that can cause issues even if the individual foods don't. It's like connect the dots in the stars with no numbers. Not going to happen. I'm committing to keeping the diary for the next 30 days and faithfully noting all that I eat and all that I experience and then let my engineer husband look for patterns.

What happened to "Tiger (Cub) Blood"

I was fairly certain how I was feeling on Day 10 was more from the IV steroid treatments I was receiving than my diet; the last several days have been a confirmation of that certainty. I'm back to being exhausted and not thinking clearly in general. I know there will be more than one person who thinks this because I'm not eating grains, pasta, bread and rice. But, no...that's not why I'm feeling this way. My diet hasn't contained any real amount of that kind of food for years, even training for Ironman. This is certainly a result of Hashimoto's Encephalopathy. I get my next three days of treatment in a week (Tuesday, Wednesday and Thursday). I'm looking forward to it more than Christmas!!


*No gluten, ever??
I say I don't think I'll eat gluten ever again (except Mark's donuts!) because everything I have read says people with autoimmune conditions/diseases should NOT eat gluten, ever. When my issue was "just" my thyroid it was easier to say "this pizza isn't going to kill me". But this new twist on Hashimoto's has been scary to say the least. The antibodies are attacking my BRAIN. We take thinking for granted, at least I used to. My health is more important to me than any gluten filled food could possibly ever be. And, if I thought eating Mark's donuts would kill me, I wouldn't eat those either! I've read too much about how the immune system works to ignore it. I'm not saying it's bad for everyone, but I believe it's not good for me. Until something/someone convinces me otherwise, I'm avoiding it like the plague. Until I go to Arkansas the next time and then Katie bar the door, I'm having not one, not two, but THREE cream filled bits of heaven in my mouth!!!  (I'll skip the chocolate milk, but I might make one of the three a chocolate covered cream filled yummness!) Because Mark's donuts will "always" be worth it (unless I find myself living down the street from it again, and then they won't be as worth it as they are now!).

Thanks for stopping in. :D

Waiting

I told you last time (you probably didn't have to be told) I am IMPATIENT! I don't like to wait for anything.

I remember the first time I made Rice Crispy Treats. The instructions said to cook the butter and marshmallows on low until they were melted and blended. I couldn't understand why on Earth you'd cook it on low. In case you've never tried it, marshmallows will disintegrate (FAST) if you cook them on high. Sad day for me since we only had one bag of JetPuffs.

(By the way...this is day 26 of my Whole30...it wasn't a great idea for me to search for an image for this post!!)

I remember a time I woke my small kids up at midnight because I was so excited for them to get their Christmas presents I couldn't wait until morning!

I could go on, but I won't/

Right now I'm having to wait until the first of the month for my next IV treatments and I don't like it one bit. I wish I could get the next treatment NOW. I want to feel better (again) NOW. AND I want to keep feeling better until I'm 100. I'll agree to feel old for the subsequent 13 years I want to live after that, but only after my age has gone beyond three digits.

Thanks for stopping in.