Tuesday, May 3, 2016

"Ain't Scared"

I have loved Brené Brown for a long time but recently a dear friend turned me back on to her. I'm sure I'll talk about this friend a good bit in the coming posts, so let's give her a name right now. I'm going to call her Emp. That's short for "empath" because an empath is someone who is capable of feeling another person's emotions. (You know who you are and you see me...)

Las Vegas from the Space Station...if you think that's
bright, you should see them from an airplane!
If you have ever been to a really good massage therapist, or physical therapist, or chiropractor, you are going to know what I'm talking about here. You go in and say "My leg hurts, pretty much all over." They look at you with a devilish grin and put one finger on the EXACT spot that causes excruciating pain that sends you to the floor in a withering puddle! Well Emp is like that with emotions. Now, I have to say I feel like an open book with emotions. I feel like I can't hide ANY emotion I have EVER. So maybe she really doesn't have the super powers I think she does. Maybe reading me is like seeing the lights of Las Vegas from an airplane, at night. But, she not only reads me, she reads me out loud, TO me. And she points to emotions in me that I haven't been able (willing) to see, or that I haven't looked at in a long time.

Shifting gears here because that was getting a little uncomfortable...

So, back to Brené Brown (because that's a little easier).... First of all, you know who she is right? In June 2010 she did a TED talk where she had a breakdown "spiritual awakening". After talking with Emp, I found a second TED talk she did on shame. In this short video, Brené defines shame as "the intensely painful feeling that we are unworthy of love and belonging." She goes on to say shame needs three things to grow: secrecy, silence and judgment. But when you put emapthy on it, shame can not survive. Shame depends on me buying into the idea that I am alone. Shame says "you are not enough" and if that doesn't work it says "who do you think you are?".

Hmmmm....that's incredibly uncomfortable.

Let's shift gears again...

I remember when I found out Santa Claus wasn't real. (That's WAY less uncomfortable than where I was going, trust me.)

I was a BIG believer in Santa. Santa was AMAZING. He knew when my very favorite baby doll was getting worn out and would bring me a new one. He knew when I had moved on to bigger things and brought me a play kitchen with fake canned goods! He knew when I stopped playing house and started playing with Barbies and he brought me every Barbie toy under the sun (except the dream condo, I never got that...but I did get the sail boat and the Corvette). One day my best friend at the time told me her parents told her Santa wasn't real. She said he was made up by parents and parents bought the presents. I was DEVASTATED. I asked my mom, searching for clues. She said if (she who shall not be named, because no one is named in my blog) didn't believe in Santa that's why he didn't bring her gifts. If I believed then I would get the goods. So I asked Santa for a TV! But I wanted to be sure he was real so when I wrote the backup letter I didn't only ask for a TV, I asked for....

...wait for it...

A Bing Crosby White Christmas record album!!!! (You thought I was going to say pony, didn't you?) No, we didn't have a yard big enough for a pony and even Santa couldn't fix that!

Well...on Christmas morning I saw the TV, but I kept looking. AND THERE IT WAS!!! Bing Crosby smiling at me saying in his buttery smooth voice, "SANTA CLAUS IS REAL!!!!!" I was overjoyed at receiving that album!! I can't remember what I had for lunch two days ago, but I vividly remember jumping up and down at the sight of that album!!

A couple of months (maybe days or weeks, but it seems like months) later I found the letter I had written Santa...OPENED...in my MOTHER'S PURSE!!!! (GASP!!) I think she fed me some line about how Santa had sent it back to her so she could keep it like she kept my baby teeth. But the damage was done.

I felt like a fool. I had practically punched my disbelieving friend in the face with that album as proof positive he was real--because I had NEVER told ANYONE about wanting that album. I had never even said it out loud. The only utterance of my want was that letter. And I had believed he was real because my want had been delivered to me. And my belief was shattered.

What does this have to do with anything?

I had that same feeling last night. I was FaceBook chatting with the moderator of a FB support group I had asked to join for Autoimmune Encephalopathy. He told me the admins of this group are basically on top of every research study done and they don't allow functional medicine stuff to be bandied about on the forum. He said there is no magic cure for this thing I've been told I have. There is no cure. There is no spice or herb or special diet that will stop this thing going on in my brain.

Did you hear that? There's no special diet.

I felt like he told me Santa isn't real.

And then he went on to tell me some Autoimmune Encephalopathies come baring the gift of cancer that shows up a couple of years after diagnosis.

So, you tell me that I basically have no control over this thing that is happening to me, and there's a chance it could do even MORE bad things to me?


In one of these videos (probably this one) Brené says perfectionism is a coping mechanism to avoid blame, shame or judgment.

Can I tell you one more story?

When I was little I wasn't a good tooth brusher. My mom had to be on me all the time about it. When I was in junior high I needed braces. I believed the terrible lie (that I had made up in my own mind) that the need for braces was connected to me not brushing good enough. And now my lack, my dereliction was on display for all to see. (To be clear, I didn't think that of anyone else who had braces, it was just about me.) I was so happy when they came off because my teeth were perfect.


I want to say I'm not scared. I want to say I'm in control. I want to BELIEVE those statements. And I don't want any of this to be showing me something more about myself, about how I "do life". But I am convinced people live at a pattern level. This is why I can watch how you swim and know how you handle adversity. I can watch how you ride your bike and can know how you are in your marriage. This is how Emp can listen to me babble on about diet and surface level life mumbo jumbo and she can know what's really going on. I can see it in everyone else, but I sure don't like looking in the mirror.

I WANT my current health situation to be my "fault" because then I'm also in control.  What's so ironic about that is that being in control also leaves me open for (self) shame, (self) blame and (self) judgement. I don't need anyone to tell me I'm not enough or ask me who I think I am, I do it to myself every single day. And the truth is I do it in an attempt to avoid being seen for what I really am...scared and vulnerable.

Sunday, May 1, 2016

I'm Not a Victim, But Am I Vulnerable?

Fair warning...this is in NO WAY related to running.  And...it gets pretty deep. Dive in at your own risk.

In an effort to be part of a community of people who are having the same kind of symptoms as I am having, I joined a FaceBook group. Scrolling down the list of members I came across someone who "advertises" HE on the "about me" section.  When I visited this person's public page I saw post after post after post about "my very rare brain disease" along with what felt like every detail of every symptom. Now, this was supposedly done in the name of "awareness" but that's not what it felt like. It felt to me like a spotlight. "Hey look at me, I have a very rare disease and I want everyone to know my travails!"

To an extent, I get it. When people ask me "How are you?" I don't want to say "I'm good" because I'm not good. I write in this blog because I'm trying to process what is happening to me. I publish it (rather than keeping it in a private journal) to let people who care know what is going on with me.

I think there's a fine line between vulnerable and victim, and I'm not entirely sure where that line runs. I don't think it's a straight line and I don't think it's the same for everyone which makes it hard to pinpoint.

I want to be clear. I am not a victim. I don't feel like a victim and I don't have a victim mentality. I do not feel powerless and I don't feel like someone/something "did this" to me. I don't feel like this thing that is happening right now to me is completely outside of "my" control.

But maybe (just maybe) there's a polar opposite to victim mentality. Someone who feels in control of more than they really are. Someone who wants to control things that really aren't in her scope or her ability to manipulate.

Okay...we all know I'm talking about me here so let me just be vulnerable and honest.

There have been times in my life when I have been a victim of things that were outside of my control. In an effort to avoid feeling powerless I took on responsibility for those things. As an example...my car was broken into when I was a senior in high school. It was in the shop being repaired from a little accident I had been in. The thief stole my stereo, speakers and my "class of 87" earrings. Let me pause and say I LOVED those earrings. They were given to my by my high school crush who passed away a few years ago. I was devastated at the loss of the earrings even though the stereo and speakers were worth a lot more monetarily. At the time, and many times over the last 29 years, I have thought to myself, "I should have taken those earrings out of my car before taking it to the shop." Or I have thought, "If I hadn't been dumb and caused the damage in the first place the car wouldn't have had to be in the shop and I'd still have those earrings." Yes, I get how stupid that sounds. Sure, the thief was wrong for breaking into my car but both statements really are true.

In an article titled "Why Do We Blame Victims" (Psychology Today, November 2013), the author says:
"...these victim blaming tendencies are rooted in the belief in a just world, a world where actions have predictable consequences and people can control what happens to them. It is captured in common phrases like "what goes around comes around" and "you reap what you sow." We want to believe that justice will come to wrongdoers, whereas good, honest people who follow the rules will be rewarded. Research has found, not surprisingly, that people who believe that the world is a just place are happier and less depressed. But this may come at a cost—it may reduce our empathy for those who are suffering, and we may even contribute to their suffering by increasing stigmatization. " 
The author goes on, in the comments, to say:
"And when (bad things happen to good people), it upsets our "good things happen to good people, bad things happen to bad people" belief. Because now, a bad thing has happened to a good person... It implies that even if we are good people, bad things can happen to us. Most people don't want to believe that, because then they would feel vulnerable. So instead, they look for ways to see the victim as a bad person, so that they can hang on to their own belief that the world is a fair and just place, and thus feel safe." (emphasis mine)
Bad things have happened to me when I was vulnerable. Even worse, bad things were done by the hands of someone who should have protected me. Rather than place fault on the wrong-doer, I took on a measure of responsibility that was honestly not mine. I made the wrong-doing about me. Because if it was about me then I had opportunity to change it. Do you see the power shift there?

I have done the same thing with race results. (What did I do wrong so I can change it and do better next time). I have done the same thing with this illness. I have wanted so desperately for there to be something I can control and change that has caused this thing to be happening in my brain because if that's not the case then it leaves me completely vulnerable to it and powerless against it.

I am perfectly fine being vulnerable when I know I won't get hurt. I can lay out my tender underbelly all day long if I have a measure of certainty that I won't be ripped to shreds. I can dare greatly when the stakes are low. But the feeling that bad things happen because I am not enough, I didn't do enough, I didn't plan enough, I didn't pay enough attention, I didn't anticipate enough...I don't know how to get around that. Letting go of that means I'm vulnerable to being a victim. Again.

Saturday, April 30, 2016

"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