Tuesday, May 31, 2016

Cotton Row Number 7-Cashing the Check

Well...it's ironic that this is "lucky number 7".

Pre Race (written Sunday afternoon)

I just published my last post about the things I've learned the last six times I've run Cotton Row. Let me just say, working though the last six years has helped me a great deal. I've been torn about what to do tomorrow. There are always choices to be made, but the decision to run this race wasn't an easy one.

Not only have I been "sick" with brain disease (I think I say it to solidify it in my mind that it's a real thing), but there's another aspect of the decision as well. I don't want to gloss over my physical state of being. I have NOT trained for this race. I haven't run enough to say I'm physically ready to run a 10K. I have been terribly weak and any effort has been taking a lot out of me. That said, I like to think running a 10K won't be impossible.

I did STRONGLY consider surprising Dwayne and being HIS biggest fan tomorrow. I would tell him
Doesn't everyone love more cowbell?!
I'm running but have my cowbell and some posters in the car. When he went to the front of the pack to start the race, I would run to the car and then go find him on the course they way he did with me the first 5 years. It might throw him off a little bit at first because he wouldn't know what was going on, but I think he'd be fine and it might help him have a great race. But this is NOT an A race for him. I would be giving up a race that I really enjoy to support him on what amounts to a training run.

I have tried to weigh the cost of this race with the value of running it. The problem is I don't quite know what the cost will be. But, again, I can back off and walk any time I need to, and if it becomes too much I can pull out pretty much anywhere on the course. I'm never too far from friends who can rescue me. :D

I'm very excited to see that tomorrow will bring.



After I wrote the above, Face Book reminded me of a couple of previous blog posts I had written. I "opened them in a new link" to read later but didn't read them right away so they were still waiting for me this morning when I sat down to do some work.

I'll come back to those posts tomorrow, but for now let me tell you about the race.

Dwayne and I woke up early, I took a shower (thank you to Katie for giving me this pre-race ritual). I was very calm and relaxed overall. Since I had made up my mind the day before to run it, not race it and not back out of it, it was just a matter of moving forward one step at a time.

We parked in our usual spot and then headed over to the VBC. I chatted with some friends, went to the bathroom a couple of times, listened to the pre-race stuff, saluted to Taps, sang as much of the third verse of America the Beautiful as I knew (well...I hummed it anyway), and the gun went off!!

Since I lined up pretty far back, it took a bit of walking before I was able to start jogging. About 1/4 mile in I started second guessing my decision. I quickly shut that nag down and just started thanking God for the opportunity to be out there running with so many people (there were 1862 finishers!). At about the 1 mile mark, maybe a little before that I got behind a friend whose call sign is "Tank". He had the perfect double time cadence and let me tell you, there's nothing more hypnotic than running behind (a) Tank with perfect cadence. I could have probably stayed there all day but he kept looking back, probably to see who the dead weight was he was having to pull! I decided that I wasn't really "running my own race" while being mesmerized by his metronomic feet so I moved over at the first aid station to fill up my water bottle.

As I was running up the little hill after the cemetery and before the left turn onto Owens, I saw a runner in front of me who was looking down. It's not a steep hill, but it's a rise for sure so we were both breathing heavy. I couldn't help myself...as I ran alongside of her I said "you'll get more air if you keep your head up". As I looked over I saw it was a good friend of mine. I'm going to call her H3. (I'll explain in a little bit.) I laughed and said "Hey it's YOU!!! I'm glad it's you because I was talking before I could stop myself. You will just laugh at me but a stranger might have spit on me for the unsolicited advice!!" She did just laugh.

Side note...when you run up a hill, run "proud". Keep your chest up and open and don't look down. You lose a lot of energy and a lot of lung capacity by bending over and looking down!! :D

For the first time ever on Owens I took the "low road". There are two sides to Owens and I have always taken the one to the left (the "high road"). It feels out of the way to move to the right. I won't do that again. I was watching my heart rate (well over the 150 goal I had set originally) and decided to take a little walk break (not my first one). H3 passed me by on the high road. Then I ran a bit and she took a walk break.

We got to the bottom of THE hill about the same time. She asked me if I was going to run it and I said emphatically "NO, but I'm going to start it". I had no intention or expectation of running the whole way, but as I got started I felt good. The theme from Rocky was playing and I passed the first mail box and then the second one...I got to the little "flat" section and I was able to pick up the pace a little bit. The last little bit is pretty steep and the thought crossed my mind that it was a little stupid to be running but I really felt like I could make it...so I pressed on. As I topped out the hill and made the right turn onto Tollgate I cheered for myself! "YES, I DID IT AGAIN!!!" That's two years in a row I have run the whole hill!!! Now if I can just do it in the middle of an actual RACE, and then keep running....

As I started walking I knew H3 had to be right behind me. I knew she would eventually catch and pass me but I wanted to stay in front as long as I could. I don't know why. It was stupid, but I started trying to run again. I couldn't keep it up so I started walking. As H3 ran past me I told her how good she was looking and to keep it up. She looked over her shoulder and yelled at me "COME ON DANA". I decided I would try to stay with her as long as I could.

As we were running down Bankhead H3 said she was going to back off the pace a little bit so I asked why. She didn't have a good reason and we were about to run up a little rise so she said she would keep going until then. We walked a little but and started running again. We talked and talked and ran and ran. Daisy just moved into a house on the course so she was out cheering for the runners and shaking a tambourine. That was a huge boost and gave me a pep in my step. We got to mile 6 and H3 said she needed to walk a little because her heart rate was higher than she wanted it to be. She told me not to walk if I didn't need to. I was feeling good and my HR wasn't "too" high so I decided to keep going. I figured Dwayne was surely going to be showing up any minute. (His plan was to race and then turn around to come find me on the course.)

I was right. Just seeing him makes my heart skip a beat. He asked how I was feeling and I did a genuine assessment. I felt surprisingly good. I was fatigued, but I felt good overall. He told me he finished in right at 50 minutes. (That was slower than he wanted to run.) He said he started out fast but faded bad in the last mile. The heat had really gotten to him. When we made the final left hand turn I knew it was about maybe 1/2 mile to the finish so I started running just a bit faster. Team Red White and Blue was out with the memorials to the soldiers and waiving the big American Flags. It always gets to me.

Dwayne ran with me to the start line and then said he'd meet me around at the finish. I pushed in and finished feeling really great. I didn't look at my time and I didn't care. H3 was pretty much right behind me.

So, why "H3". Well...because she was in the Army and she is very strong and she has lost weight since I've known her and she's reliable and dependable and indomitable. The Hummer is a strong Army vehicle that will go for days. The H3 is a lighter version of the Hummer. I hope she takes it for the compliment that it's meant. :D

Thanks for stopping in and sticking around. Part 2 of this (where I talk about why those two old posts matter so much) will be tomorrow....

Sunday, May 29, 2016

Looking Back to See What I've Learned

How about a post about running on my running blog?!

Monday is the infamous Cotton Row Run 10K. It will be my SEVENTH time to participate in this race. It is a thorn in my side. But we learn from our thorns.

Take a stroll down memory lane with me.

Year one, 2010. I had started "running" in January that year. Well...I started walking every other day for 30 minutes, and worked my way up. In less than SIX months I finished a 10K!! Looking back, that is freaking AMAZING!! At the time I wasn't thrilled. I had gotten injured because I wasn't a runner and ramped up my time/distance way too fast. I thought I might have a stress fracture and had an MRI like the week before this race. And yet, I still ran it. I finished in ...it doesn't even matter what my time was, I FINISHED a 10K and I hadn't even been running for six months! I learned to persevere through difficulty. (There were many other lessons that I didn't learn...)

Year two, 2011. I had been running for about 18 months. I had started swimming and riding a bike and had completed two triathlons by that point. I was feeling pretty good about where I was physically. My goal was to break an hour but ultimately I wanted to run my own race and do my best. I went BARELY over an hour but I finished that race feeling good about how I had run. Ironically a friend was at the finish line and caught the EXACT moment in time I realized I missed my goal by 24 seconds... I was disappointed about not making my goal, but I didn't dwell on it in the moment. I had raced the nag in my head and I had won. Well...until a few days after the race when that nag caught up to me... That year I learned you can run from that which chases you, but you can't run from that which is inside of you! (I'm still learning that one.)

Year three, 2012. I went into the race secretly hoping I would finally break an hour. I didn't train for that goal. I didn't have a plan to meet that goal. I just had a secret expectation. One that didn't match, or meet, reality. I did have a plan on how I would run the race (keeping my heart rate below 170). I ran that plan and got the result that matched the reality of what that plan would bring. But when I didn't reach my secret goal, I was disappointed. I realized if I was going to have any hope of breaking an hour I better train and I better have a plan. I threw down the gauntlet. I said 2013 would be my year to break an hour. Period. End of story. This was the year I learned about setting goals and managing my expectations to match reality.

Year four, 2013.  I had set the goal in 2012 saying "Next year I will have a plan for how I want to RACE this event!  I know the course, I know how I run it.  I will prepare and I will blow my time out of the water.  Mark my words." I went into this fourth year with a plan on how I would run the race. I had trained (some, although not as much as I had wanted because my shoulder had been injured since the previous fall). I had my goal FIRMLY in mind. And...I did it! I FINALLY broke an hour (57:43). I learned how to balance my expectations with reality and how to push reality to meet my goal.

Year five, 2014. This is the year I got summarily schooled by a dear friend who (whom?) I have "adopted" as my brother. In January of that year I had shoulder surgery. I had been going to PT and had JUST started running again when this race rolled around. My coach had told me it was to be a training run ONLY, since there was NO way I was ready to attempt to break an hour. I listened with one ear, and I ran the race as planned. I got the result I was ready for and the one I expected....I finished. 2nd worst finish time ever for me. I wrote up my recap saying it was "decent". My brother let me have it. (You should click on that link and read it...it's good.) He reminded me "I would never tell anyone who had given an effort they were "decent".  (And to be clear--anyone who starts a race gives an effort...anyone who starts to train for a race gives an effort...anyone who gets off the couch gives an effort---it's all relative, but it's all en effort!!)" Boy did I need to re-read that post today. Year five was all about remembering the big picture. I FREAKING ROCKED THAT RACE!! I was less than FIVE months out from shoulder surgery and I RAN A 10K!!! Holy cow! What was I thinking to say that was decent??!! Are you kidding me!? If I could slap that girl, I would.

That was the year I began to learn to honor my body and to began to learn how to be happy with the outcome my body was able to give me. Yeah...I'm still learning that one too.

Year six, 2015. I don't have a recap of this one. I wasn't writing much then. I had been struggling with my shoulder (still) and had been doing some PT trying to get ready for a 2.4 mile swim (in preparation for my second IRONMAN). The plan was to run with Dwayne, who was going to push me to a PR. This would be my first time running this race WITH my husband. Every other year he was my biggest fan. He followed me around the course and cheered for me and smiled at me when I needed it the most. This year we would run it together. But he woke up VERY SICK. Then we got to the race and found out a tree had fallen on the course so the start had to be delayed about an hour. He just felt worse and worse. But he ran anyway...until he had to walk. We did a walk run the whole time, holding hands along the way.

...OH...there was one thing that was almost as wonderful as running with my husband. I RAN THE WHOLE HILL!! Mountainwood isn't very long, but it's steep. Although I've run it in training, I had never run it in the race. Since we were doing a walk run almost from the very start, I got to that point feeling good. So I ran up the whole time!! But even that pales in comparison to the feeling of being with Dwayne the whole race. I was thrilled to find out a friend snapped this picture of us.

Best. Race. Ever.

I have no idea what my finish time was. I could look but it doesn't matter. This was the year I learned there's more to life than running races, goals, expectations and finish times.

So...tomorrow I'm registered for this race again, for the SEVENTH time.

I have a goal (finish the distance). I have a plan (walk run by HR and honor what my body and mind are willing to give me in the moment). In order to make that goal I will have to persevere through difficulty. I am managing my expectations and they match reality. I will NOT be running this race with the nag in my head and I will not be running with Dwayne by my side or as my cheerleader. (Dwayne is planning to race it.) I do have a back up plan in case my body (or mind) just won't give me what I think I want but I won't give up my goal or my plan just because it's hard.

Tomorrow, I am running this race for everyone who thinks they can't and for everyone who really isn't able. There will come a day when I am not able to run a 10K. The reality is tomorrow might be that day. But that's not my plan and that's not my expectation.

Stay tuned...

Friday, May 27, 2016


Okay...truth be told, I'm scared.

There, I said it out loud.

I'm only saying it because I think there's power in admitting fear. There's a measure of control in the admission. Ironic, huh? :D
Phone number removed because this is a public blog!

I bought a medical alert ID bracelet.

I hope it's wasted money, but I have read several stories about different people having issues.

Okay...seizures and hallucinations. There, I said it out loud.

Seizures and hallucinations.

To be clear, I don't expect to have seizures and hallucinations. But those are indeed symptoms.

AE is rare enough there isn't good information out there to know what percentage of people have those symptoms, at what point in the disease progression people have them, or any other specifics. But, if I were to have a seizure, giving me anti-seizure medication wouldn't do anything to help. I would need steroids.

There is also a slight chance I could become lost and not know who I am, not know how to use the phone, not know my husband's name. Well...there's not a slight chance, that happened already. ((In case you missed that story...I pulled into my driveway one day and forgot how to open the car door. I was struck with the thought that I didn't know how to get out of the box I was in. I started looking around trying to figure out how to contact "that man" (my husband whose name I had forgotten) so I could get out. It didn't last long. I "found" the door handle and remembered Dwayne's name fairly quickly. But forgetting those things even for a minute was the final straw that caused me to make the initial doctor's appointment.)) So...if that were to happen again, and last longer the next time, I wanted to have a safeguard in place.

Yup. I'm scared.

When one thing happens one time, you can chalk it up to a fluke. When various things happen together and they add up to something that probably isn't a fluke...it's harder to ignore. (Don't get me wrong, it's still possible to live in denial, it's just hard to breathe when your head is in the sand.)

Wearing this bracelet is a reminder of those symptoms and a reminder that I'm scared. As much as I would really like to ignore what is going on, as much as I would like to keep my head buried, as much as I would like to think the diagnosis is wrong and there is some other explanation...I can't. The truth doesn't change just because I refuse to believe it.

The incidence of AE is about 1 in 100,000.  The population of Huntsville is right at 180K. That means it's probable only one or two people in this town have this thing. There are about 4.8 million in Alabama, that means about 480 have it in the state. 32.4 million in the US and a wopping 740.4 million in the world likely have AE. Am I really one of 740.4 million (out of 7.4 billion total people) in the world who likely have this thing?

If I am one of these...I can reduce my fear of the symptoms down even more by supposing the incidence of one of them actually happening. Maybe the chance is 50% it will happen to me, so just one chance in 64.8 million. Maybe it's only 10% which makes it 1:74 million. I think I like those odds better but playing with the numbers doesn't really change anything at all. (And, my math and or my logic is probably WAY wrong...)

No matter what the nubmers are, if the diagnosis is wrong or if I don't have the symptom, buying this bracelet and being scared really didn't matter in the end. If this isn't what the dr thinks it is. If there really is something else going on, then all of this is a silly, completely unnecessary precaution. I'm okay with that. I'm okay with finding out I really have a hormonal migraine exacerbated by stress and I was wearing a dumb bracelet for no good reason. Because there's no harm done in that case.

Wearing this bracelet won't help me not have a seizure.

But what if I do have it, and what if I do have an "issue"? Wearing the bracelet might help me get the help I need faster.

Matthew 6:27 says, "..who of you by being worried can add a single hour to his life?"

It think the key is to be scared and to not worry. It's okay to be scared. It's okay to admit it. It's okay to let that fear help me to make preparations and take precautions. But worry does me no good at all. Healthy fear on the other hand does serve a purpose.

Thanks for stopping by and sticking around.

Tuesday, May 24, 2016

Fairy Tale Life

I tell my husband all the time that he has given me a fairy tale life. While it's true, I live like a princess (for the record, Queens have more responsibility than princesses do), the bigger truth is that I've always lived a fairy tale life.

Fairy tales don't start out "happily ever after". That's the way they end. Because I know I will spend eternity in Heaven, that is certainly the way my life will finish up. But fairy tales start in a far away land, long ago, once upon a time. They are fully of hardship and challenge. They all have an evil-doer. They all have a moment when you wonder if this will be the fairy tale that doesn't quite pull out of the nose dive and ends in flames.

I've had life moments when I felt like the pre-Charming Cinderella. I've been the "evil" step-mother. I've lived deep in the woods, sleeping my days away. I've kissed a lot of frogs. I've let my hair grow, and I've chopped it off. I've been swimming in the sea and have soared in the sky.

And, I know I will get to my "happily ever after" one of these days.

In the mean time I'm living the day to day life of a fairy tale princess. Some days the sun is shining and the birds are singing...and then there are days the enemy is coming to chop off my wings.

Wednesday, May 18, 2016

Holding Pattern

I went to a follow up with the neurologist yesterday. Before I even left his office they had called Mayo with the referral. Mayo will "review my records", which will take 7-14 days, and get back to me (hopefully) with an appointment date. It can take up to six months to get in and the appointment will be about a week long thing with back to back tests and doctor consults. At the end of that week I should have a firm handle on what is happening in my brain and what the best treatment plan will be.

In the mean time...I'm in a sort of holding pattern. Because my response to the steroid IV has been so good, and the return to symptoms happens after about 2 weeks of being off the steroids, the doctor has changed the treatment to 1/2 the dose I was getting but twice a month instead of once a month. I'm really hoping I get as good of a response and that increasing the frequency makes the effect last longer.

I'm also hoping the appointment at Mayo doesn't conflict with Dwayne's Ironman (end of September). Make no mistake, my health, and that appointment, does take precedence over IMChoo, but I would really like it if the choice didn't have to be made at all.

The important thing for me to keep in mind is that "holding pattern" doesn't mean that life stops. When I have having to wait for something major to happen, I have a tendency to let other things fall apart. "Well, I'm really sorry I didn't wash any clothes for three weeks, I'm just anxiously waiting for X to happen." (yes, that's an exaggeration) (maybe)

Imagine...you hear a ticking noise. You aren't sure, but it sounds like a clock. Or maybe a bomb. You aren't sure, but you've been told to wait to find out. Yes, I'm being a bit melodramatic...have you met me?

What I do know:

  • there is something going on in my body that is impacting the way I think, see, feel and function. It's not HORRIBLE. I could get by without ever telling anyone something is wrong but people who know me well would notice something is "bothering" me.
  • whatever it is that's wrong responds to steroids. That magic juice makes me feel like ME.
  • a very smart doctor has said, with certainty, that thing that is wrong with me is Hashimoto's Encephalopathy (aka Autoimmune Encephalopathy)
  • my very smart doctor has said there are other doctors who have seen many more patients with this who will know the best way to treat it so I'm being referred to the best of the best
I can't get hung up in the thought that I am waiting "UNTIL" I go to Mayo. I have to keep moving forward.

Thanks for stopping by and sticking around!

Friday, May 13, 2016

La La La...I'm NOT Listening...

I have decided I do not want this diagnosis. I think I like the "it's just stress" answer better. "You are getting older." "Early menopause." "Depression." Even "It happens" is better than what I've been told. Mind you, what I've been told is NOT -by a long stretch- the worst thing I could have been told. There are MANY other things that are WAY worse than this. And, as it stands, what I do know is looking better every day. (Well...if I'm being completely honest, that's mainly because I don't have all the information and I'm choosing what I am focusing on at this point.)

I found a blog written by a gal who was diagnosed with AE (autoimmune encephalopathy) who is an ultra runner!! She was training for a 100 miler and had an acute onset of symptoms in March. She got treatment (I'm not sure exactly what treatment she had) and she is back to running 75-100 miles a week. I think she has a considerably stronger will than I do. I think she's able to focus only on the positive whereas I've been getting caught up in the "what-ifs" a little too much. I think she's better at ignoring some physical/mental symptoms and push through much better than I have.

Early on when I started to think there was a problem I ignored it and decided it was stress or training or diet or sleep or hormones. It's like seeing one ant on your floor. You just kill it and you move on. You decide it's an anomaly. Unless you are anxiety ridden, then you might take drastic measures, but for the general population you don't freak out.

But in December I knew something was really wrong. I just couldn't think. I was struggling with word finding. That's really funny until it's happening several times every day, then it's annoying at best, alarming at worst. But I still attributed it to stress, diet, hormones, training or lack thereof, and poor sleep (related to all those other things). I figured if I could just get those things in line, starting with my diet, it would all come back to normal. Thankfully Dwayne pushed me to make the appointment.

By the end of January I was worried. I had cleaned up my diet (for the most part) and although I did feel somewhat better some of the time, I was having more symptoms (mainly dizziness). It was Super Bowl Sunday that I found out I would be getting a quicker appointment with the neurologist which happened the following week. By the time he had completed all his tests and I had my follow up, I was certain something was really wrong. I had done some research on what the dr was suspecting (Hashimoto's Encephalopathy) and I didn't think that fit. The symptoms people seemed to have (seizures, coma, psychosis) didn't fit, and from what I was reading it was incredibly rare.

I have truly gone through all the stages of grief.

Well...more accurately... AM GOING.

I think I'm around the "Dialogue and Bargaining" stage now.

Here's the thing, like this graphic shows, it's not a linear process. There are loops.

But I think it should look more like string art gone bad. Today I'm back at shock and denial. I don't want this thing they are saying I have. I am still holding onto hope there's another answer.

The kicker that forces my head out of the sand is my response to steroids. It was remarkable. Miraculous really. That is a very sure sign-proof positive-that the diagnosis is correct.

I think the biggest reason I haven't yet moved into acceptance and on to a return to meaningful life is that I don't have all the necessary information. I have a follow up with the neurologist next week but I still won't have all the information I want because there are tests that "should" be done that can "only" be done (accurately anyway) at Mayo in Rochester (from what I understand).

It's very hard for me to move forward with uncertainty.

That has to be where faith steps in. I say I have faith that God has a plan, a good plan. I say I have faith that He works all things for good. I say I trust that no weapons formed against me shall prosper.

If I truly believe those things then I won't keep my head in the sand. I won't be afraid, I won't be embarrassed or anxious. I won't stay overwhelmed and depressed. I won't have to struggle to find meaning in the struggle. I will be able to reach out to other people to ask for help. I will boldly explore options and be empowered to move confidently into the future.

Keeping my head in the sand, being angry over the cards I have been dealt, being scared over what the future might hold....those things keep me from living the life I have right now. Those things keep me trapped.

I don't know what the future holds but I'm going to do my best to live today with my face in the sun.

Thanks for stopping in and sticking around!

Thursday, May 12, 2016

Grieving Loss

I have loved watching Survivor since the second season it aired.

I didn't love it the first season. In fact, I couldn't understand why anyone would ever want to watch such a stupid show. A bunch of castaways on an island voting each other off and someone wins a million dollars. That didn't make any sense to me. My (now ex-) step-son came home from elementary school talking about how everyone was watching this show so we turned it on one night. It happened to be an episode where two of the castaways were hooking up every chance they got. First of all--not appropriate viewing for middle schoolers. Second of all...GROSS. These people were supposedly not bathing and didn't have basic hygiene items such as deodorant and toothpaste. Not to mention every other factor that made this WRONG. So, I said we would not be watching that vile show in our house.

Fast forward to season two (in the fall of 2000). The first show aired and everyone at work was abuzz about it. I wasn't buying in. After several shows, a co-worker told me how it was a very different season than before. No one was having random hook-ups and the show was focusing more on the social interactions and physicality of the challenges. I decided we'd try again. That night was when Michael Skupin fell into the camp fire and had to be evacuated from the game. THAT wasn't what hooked me, it was the reactions from his opponents and the fall out surrounding him leaving the game. I can't explain it but I fell in love with the show that night. I have watched every single episode of every single season (including going back and watching season one).

It wasn't too long before I starting thinking maybe I could be on that show. I wasn't super strong but I felt like I could play a decent social game and I thought I could mentally handle it. I want to say it was in the winter of 2005 they announced a casting call in a town about an hour away from where I lived. I STRONGLY considered it, but I just couldn't wrap my head around being gone from my kids (who were 13 and 11 at the time, and a step son who was 15). It was 39 days not including the travel there and home. Plus I was  THIRTY SIX at the time...not a spring chicken anymore! (Oh little did I know.) I passed on it and just months later I was knee deep in an ugly and very painful divorce.

Every season since then I have watched with the idea of "maybe one day". As I trained for Ironman Lake Tahoe I would mentally construct my audition video. Following IMLT I had my shoulder surgery so I wanted to wait until I was healed from that. Then I was training for my second IM and didn't want to interrupt that goal. After finishing IMChoo last fall I started considering the possibility of auditioning a little more seriously. But then I started having the "health weirdness".

Ever since hearing "you have an incurable autoimmune brain disease" I have slowly begun to let go of the idea that I could ever be a castaway on Survivor.

Hear me out here. I don't say this because I would stop wanting to be on the show. I don't say this even thinking that it would be physically/mentally impossible. I say this because there is NO WAY the show would allow someone with my diagnosis to go.

Not having a chance at Survivor seems like a stupid little thing. It's really just a symbol.

A very ironic one at that.

Thanks for stopping by and for sticking around.

Tuesday, May 10, 2016

Random Thoughts

Love this picture! Photo taken from here.
Dwayne noticed I'm writing a lot more lately.

I'm desperately trying to process what is happening to me. Writing/journaling/talking helps. I'm so thankful to my many friends who have allowed me to babble on about this thing. I'm sure more than one of my friends just thinks I'm crazy. But I have been told MANY TIMES that steroids don't fix crazy. The remarkable transformation I had on the IV steroid treatment is almost proof positive that attacking antibodies are the main issue.

My head is POUNDING. It's almost migraine level pain. My right ear has been hurting a lot. Yes, I plan to go to the dr to have them check it out but, again--that pain was GONE with the treatment.

I can't sleep. You might think that's a side effect but I slept SO WELL on the steroid it was AMAZING. Insomnia is a symptom and a side effect of treatment. Joy.

My hands HURT and the pain is moving up my arms. They tingle. My index fingers are numb. I don't know what this is but I don't like it. Gone with IV treatments.

My mood is CRAP. I think this has a lot to do with how I'm feeling physically. But, from what I understand it's also a symptom.

I'm glad I had a respite with the treatments. I had a break from this garbage. I had a return to ME. I like to think I'm a generally positive person. I try very hard to find the silver lining in the dump heap because there is ALWAYS a bright side. ALWAYS. This thing is wearing me down. Fast. It's almost harder after having such a good week. That reminder of what it feels like to not have pain and mental "struggle" makes this darkness even darker.

But in the darkness, the light is brighter too.

Blessings...I have so many wonderful friends who have been willing to ask me how I'm doing but who also don't let me wallow in the muck I feel I'm in. I have a saint for a husband. This man knows me and knows how to live with me in an understanding way. He knows how to ignore my mood but to also reframe my mood. He knows how to smooth and soothe me. He knows how to keep me from bowling him over with my misery. He knows how to talk me through what is happening and what needs to happen. I was connected with a doctor who knew right off what was happening to me. He was able to diagnose and point me in the direction of treatment.

Let me pause there...that's been a HUGE miracle in and of itself. When I started having symptoms that were too big to ignore I had a terrible thought it might be MS. I went to my family dr and they did some preliminary blood work-all normal. Dwayne said he wanted a referral to a neurologist (I think he was thinking early onset Alzheimer's). I didn't want to go. I thought it was just my diet. He insisted that I get the referral so the family dr made an appointment. But they made it with a headache only neurologist. At the time I was only having an occasional headache so when I got to that dr, she couldn't do anything at all. She wanted to send me to a friend of hers. I was talking to friends with MS who suggested I go to a "local" MS guru doctor so I asked my family dr for that appointment. She HIGHLY suggested I go see someone else.

Pause again...I have a BAD habit of not listening to people. I have had a tendency to do what I WANT, what I think is right for me. That's not a horrible thing in that it kept/keeps me from peer pressure but it's a bad thing when I don't have all the knowledge and insight needed to make a truly educated decision. In this instance I had the foresight to defer to the expertise of my doctor who know me and who knows the medical community.

When I found out who the appointment was with, I also found out he is a good friend of a friend of mine. The appointment was pretty far out because this guy is AMAZING so I played the friend card and asked if she might see if there was any way I could get in earlier. As it turned out they had a cancelation anyway so I got in much earlier than first expected. ((I don't know if I was moved up on the cancelation list, but my guess is that I was.)) This doctor listened so patiently to my list of symptoms and all the craziness I had been experiencing and had an immediate plan of action that started that very day with a ton of blood work.

I'm part of an online community of people with Autoimmune Encephalopathy...this is NOT the norm. Usually the symptoms are ignored (particularly in women). Sufferers are told it's stress, it's hormones, it's X, Y, Z... In all fairness, this is a rare disease. It's not the common cold. Doctors are trained to put people in boxes where they fit. It's like sorting them out I think. If a doctor hasn't ever heard of this rare thing they don't even know that's an available box! Not only that, when it's rare you wouldn't go there first. You'd go to the more obvious things--you are overtraining, you are overstressed, you are getting old, you are premenopausal.  NOT you have a brain disease that only .01% of the population of the world has ((I made that number up...I don't know current statistics.)) So people go to different doctors for years sometimes looking for answers to why they feel the way they do. I found an answer in less than three months from my first doctor visit!! THAT is a HUGE blessing.

Another random thing. My eyesight. I noticed a long time ago that my vision was intermittently double or blurred. It wasn't related to being tired or anything else that I could pinpoint. Fast forward...steroid treatments take that COMPLETELY away. I have been saying that is a symptom not just normal aging all this time and I was right. (Well, I'm saying I was right...I'm checking with a friend who is an ophthalmologist to be sure my theory is correct It seems like if steroids could magically cure vision issues they would use that first and not have people get glasses!)

Well...I'm typed out for now.  ...not really but I have other things I need to be doing so I have to be done.

Thanks for stopping in and for sticking around.

Monday, May 9, 2016

This is WAR, But I Want Peace

Photo taken from here: http://www.aristolog.com/wp-content/uploads/axepeace.jpg
Last month after my IV treatments it was a horrible roller coaster of up and down moments/days. I thought it might have been a reaction to coming off such a high dose of steroids so I asked for, and was given, a "taper dose" of prednisone. I'm on day four of that taper and I don't think it's helping get me off the roller coaster.

From what I've researched, and have been told from other people who have this disease, this is the effect of the antibodies' attack.

Allow me to give an example that may or may not work and may or may not be accurate! :D

We have had an issue with ants in our bathroom. We had no idea where they were coming from. Yesterday I noticed a cluster of them up at the top of the shower by the wall. Dwayne "killed all of them". About an hour later our bathroom was SWARMED with flying ants!! It was like they called in for reinforcements!! They were no longer contained to that one little cluster area, they were everywhere! (I was worried they might be termites, but a google search tells me otherwise.)

I think these antibodies are sort of like that. They were in my brain doing misdeeds. I launched an attack against them, pushing them back, maybe killing a few of them off. But when the IV attack was pulled back, those buggers SWARMED. It's my understanding the goal of treatment was to try to knock them out without collateral damage.

Think about a war. You send troops in to attack an enemy.  Hopefully your troops are stronger than your foe and the enemy sustains more casualties than your forces do. But there are losses on both sides so you pull back and regroup. Then you attack again. You repeat that process until your enemy is defeated.

With the ants we will go in with some bigger "ammo" than just squashing what we can see in the hopes we can kill them all off. We'll also treat outside since they have to be coming from somewhere. The goal would be to prevent them from coming back-ever.

The difference in what is going on in my body, is that my body is MAKING these antibodies. The steroids attack the "factory" (the immune system) but the reason my immune system is launching an attack against my own brain is unknown. So the factory takes a hit (not too hard because I need that immune factory to stay alive) but once that hit is pulled back, the antibody factory gets back to work. From what I'm experiencing it works even harder than before. So I end up with a flood of "ants" in my brain. The brain controls the whole body so I have pain and wild emotions and all kinds of cognitive disfunction.

It's WAY more complicated than that, but it seems like a good picture of what's going on based on what I understand.

Just like no one has the perfect answer in a war situation, I don't think there is a perfect answer for this situation. It's a reminder that I (we) live in a fallen world, an imperfect world. True peace will not come in this lifetime. We (I) just have to do the best we (I) can with what we (I) have. So I breathe in and breathe out and I move forward looking for ways to kill off ants.

Thanks for stopping in and sticking around.

Sunday, May 8, 2016

Reverse Engineering and Coming Up Empty

Fair warning...I'm back to talking about my brain.

I used to think I live in the engineer capital of the world until I sat down to write this post and did a little Google search and found this link (who knows how accurate it is and furthermore I really didn't read it,  I just looked at the pictured linked at the bottom). Nevertheless, there are a lot of engineers in Huntsville. More than that, I live with an "engineer". I put it in quotes because my husband's degree is electrical engineering but he hasn't ever had a job as an electrical engineer. But he has that kind of brain. I like to think I do to. When there is a problem, I want to figure out WHY and solve it. In my mind an engineer figures out how things work and they make them better.

I woke up this morning in tremendous pain. Not my legs like you might think after my "long run" yesterday. It was my hands and elbows. My hands hurt so bad I struggled to get the charging cord out of my phone and I couldn't make a fist. I couldn't close my hands without pain. Swelling is a side effect of steroids, but I have taken that to be a different kind of swelling; maybe I'm wrong.

Of course my first thought was "what did I eat that did this to me?!" The bad thing about trying to figure out food triggers is that a symptom can show up three days after you eat it. This could still be a reaction from whatever it was I had on Friday. Maybe it isn't food at all. Maybe it was from the run and it's just generalized joint swelling; I just feel it more in my hands? Maybe it's the antibodies attacking. Almost like damming up a stream of water and then taking the dam away-the water rushes harder and faster than it was before the dam was put in place.


To diagnose means to identify the nature of an illness or other problem by examination of the symptoms. Looking at my symptoms can give clues but it doesn't give the full picture. Traditional Western medicine solves problems in this manner. What are your symptoms? What box do those symptoms fit inside? Here's a solution to solve those symptoms.

That model doesn't usually get back to the root of the problem.

Think of a bird that can't fly. You see it has a hurt wing so you repair the wing. But then it pops up with a hurt wing again. You didn't solve the CAUSE you solved the symptom. You cured the resultant trouble but you didn't do anything to take care of why that bird had a hurt wing in the first place.

I think this is where "functional medicine" comes into play. It's harder than just looking at symptoms and correcting the resultant outcomes.

I think it's much like reverse engineering. There are different ways to reverse engineer something. One way is to take a program that is running and apply procedures to trace back the coding that was done to make that program work. Another way is to take apart a piece of machinery to see how it's built and how it all fits together.

When thinking through what could be happening in my body the possibilities are endless in my opinion. I could (okay, I HAVE) made myself crazy trying to figure it out.

And then I had lunch with a friend the other day.

This friend has a genetic/congenital condition that makes her connective tissue not function like it should. Think about it...this impacts every cell in your body. How your muscles and organs work, how your blood vessels work....  Imagine holding something that should have the viscosity of play dough but it's more like slime. My friend didn't cause this from anything she did or didn't do. It's not something she ate, and nothing she eats can CHANGE what is happening in her body. There's no emotional trauma in her past that has to be worked through. There are no exercises that will take this condition away.

And yet, there are things under her control. There are things that can make the resultant outcomes of the condition worse. There are foods that can aggravate it or work to counter the impact it has on her body.

There's a coupling of what is and is not under our direct control when it comes to our bodies. I have wanted/want this thing happening to me/in me to be under my direct influence. Yes, that is maddening when tracing outcomes back to the source is hard. But with time and work it could be done if that was the only factor.

I'm (slowly) coming to realize that it's not all under my direct influence. Just like my friend can't change the way she was born. But we can all adapt. I can learn to understand what is happening better. I can and should do all I can. But I have to keep in mind that all I can might not make big changes in the outcome. The hard part for me is the same for this medical condition as it is for training for triathlon. Doing my best and letting that be "good enough" because my best is all I have.

Thanks for stopping in and sticking around.

Saturday, May 7, 2016

Mt Carmel 5K Fun Run!!

I ran a 5K fun run today!!

FINALLY a post about running!
Well...sort of anyway.

A dear friend invited me to a little fun run in her neighborhood. I wasn't sure if I would try to run or help out or just cheer everyone on. I woke up at 2am and didn't even try to go back to sleep based on how I was feeling (wide awake!). I was supposed to be there about 7am with a start time of 7:30. As is always the case when I wake up exceptionally early, I got a TON of stuff done while losing track of time! I looked at the clock, while still in my jammies, at 6:30 and panicked a little thinking there was no way I would make it out there in time. But, I'm the queen of last minute. I was there by 6:53.

I still wasn't sure if I would try to run it. I haven't run more than a mile in over a month (I thought it was longer than that but my data is showing me otherwise!)

At about the last minute I decided to just run and see what happened. I gave myself the idea when I started that I could stop at any time I needed to but my goal was going to be to run the whole time no matter how slow it ended up being. There were some walkers behind me so I knew I would not be holding anyone up and I wouldn't finish dead last (although someone has to, it doesn't have to be me).

Without fanfare or fluff, they started the clock and we were off. I stayed within myself and just started running nice and easy. Well...that's not exactly true. I started off at a pace I knew was just a bit fast for where I knew I would end up...a blazing 9:45 pace! I slowed way down by looking at my heart rate and keeping it (at first) at about 140ish. After about 8 minutes, I couldn't keep it under 145 so I switched focus to my breathing. Although I couldn't breathe through my nose (working just a little too hard for that), I could have talked and carried on a breathy conversation if there had been anyone to talk to.

Mile 1--10:53, HR range from 81-150, pace range was 10:54-9:55

About that time I was feeling like I usually do when I come to the end of what my body is used to. I've only been running about a mile at a time for the last month. (To be clear, I have only run four times in the last month.) My body was saying "hey...we are at the end of this running thing...remember when you said you'd stop if you needed to...this is your body saying you probably need to walk or stop or lay down in the grass." I checked in head to toe and I laughed it off because I've heard all that before and I already knew it wasn't true. Instead of walking, stopping or laying down in the grass, I focused on my form, my breathing, and my sheer delight in the fact that my body was strong enough to move forward at a running gait. I said prayers of thanks that I could RUN.

Mile 2--11:03, HR range 146-165, pace range was 11:03-10:36

I was THRILLED I was on mile 3 but I was watching my heart rate continue to rise. Every time there was even a slight elevation change I could feel it. There was one "hill" (gradual incline). Interestingly enough I never even gave a second thought to getting up that little rise in the road. I was too close to making my "run the whole thing" goal and my body felt too good to walk at that point. I was breathing heavier than I would have liked and my HR was up, but I didn't hurt and I could still talk.

After that little incline, I could see what I believed was the final turn. I knew I had about .4 to go, and a nice little downhill before the turn. I knew the finish was pretty flat (maybe slightly down) but I didn't want to start speeding up too soon and flame out before the finish line!  But did start speeding up a little bit at that point reminding myself this was a fun run and there was no pressure so if I flamed out, so be it. So as I came down the hill and rounded the corner, I started picking up the pace a good bit.

As I got closer to the finish I saw two guys on the tri team I coach and asked them to come run the finish with me. I could still talk but my HR was over 180 at that point!

Mile 3--9:58, HR range 153-181, pace range was 9:58-8:29.

When mile 3 ticked off on my watch I was in full on PUSH mode, sprinting with teenage brothers on either side of me. I was just praying I didn't trip! I usually have a pretty decent finish line kick, but I never felt like I was getting there. I actually felt surprisingly smooth although I  have no doubt I didn't look smooth!

Mile 3.1--:40, HR range 182-185, pace range was 6:49-5:25!

Finish time was 32:35 (10:31 average pace, average HR 152). It was not my slowest 5K but it was my slowest "race" in like 6 years. But I have a BRAIN DISEASE, that has to count for something!

Seriously, that run was what I think I needed to remind me that this thing going on in my head is not ...

I don't know what it's not. Killing me? Taking what I love away from me? Defining me? I don't know.

There might come a day when I can't run 3.1 miles, but that day was not today!! (I may or may not have come home to take a nap, but I have also been up since 2am, so that's perfectly understandable!)

Thanks for stopping in. It's so good to be writing about TRAINING instead of brain stuff...mostly anyway.

Before I go, let me take a step back and just look at some stats for the last several months.

In March, April and the seven days of May we have had, I have run about 5.5 hours total. I ran over double that in the months of January, February, and November and over triple that (almost four times that amount of time) in both October and December. In the last 30 days I haven't run more than about a mile (1.2). The last time I ran more than a mile, it was 3.1 on March 31st at a pace of 11:37. Mid-March, when I was trying to hold onto hope I could run McKay I had 2 "long" trail runs of 6 miles (at a pace of 16:21) and 5 miles (11:51 pace) within a few days of each other. In the last 60 days I have run a total of 25 miles (not including today).

Today's 5K was a MAJOR achievement.  I think I might have to go get a cupcake from Mason Dixon. ...a Gluten free, egg free, dairy free, soy free, vegan Root Beer cupcake.

This was the one I had Tuesday to "celebrate" the end of Whole 37 and to "celebrate" steroid treatments!

Or maybe I won't used food to sooth my feelings this time.

Thanks for sticking around. :D

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.