Leveling Up in The Game of Life

Content WARNING: this post could be triggering and hard to read, for a number of reasons. (This is not a joke and not written tongue in cheek...)


Recovery is an interesting word....it means:

a return to a normal state of health, mind, or strength.

It also means:

the action or process of regaining possession or control of something stolen or lost.

Returning to a previous state of "normal".

Ever since my brain "broke" and I was forced to stop running/working out, I have wanted to "return to my previous state" of strength and endurance. I had been working out at Iron Tribe. I had completed the Grand Slam. I had completed two Ironman races (Lake Tahoe and Chattanooga). I had started coaching and directing kids' races along the way. I felt strong and powerful and healthy.

And then my brain broke.

I thought brain disease had taken something from me. I thought that regaining the fitness I had lost, regaining the brain function I had lost, would return me to a state of health.

I was wrong. Regaining the strength and fitness I had lost was just going to return me to a previous state of "normal". But I wasn't actually fully healthy.

When I woke up in the middle of the early morning I didn't expect to be hit with this ton of bricks thought. I was sitting there reading a Facebook post about someone wanting advice about returning to running after being off for a couple of years. The President of Huntsville Track Club chimed in with a BRILLIANT answer:

Start slow and short, build a solid base and a consistent routine. Make it part of your regular day so skipping a workout eventually will feel unnatural. Pick a few goals along the way over next year, use a proper plan and train for them. Then come august start your plan for RCM. You’ve got plenty of time, just get out there and do it. Life will always get in the way but try to stick to the plan. Consistency is the best thing for you

That got me to thinking...that answer is about the mechanics of running. The how. But I ALWAYS look at a different side of running...the WHY. My advice is always "Remember WHY"..."Figure out your WHY"..."Hold on to your WHY"

When I first started this running journey I was focused on the "what"-I wanted to run the Rocket City Marathon. (That's ironic...I didn't know the goal of "running" a marathon might turn into "running" as in directing). I figured out how to get there: have a plan, start out slow... Along the way I thought I figured out why.

In case you aren't a "dig deeper" kind of reader and you didn't click on that last link out of curiosity (I think you should read it, I think it's one of my better posts...), I basically said I wanted to learn how to "go the distance" because I was a bit of a "when the going gets tough I quit" kind of gal. Up until then I thought I had quit hard things. I quit relationships, I quit exercise programs, I quit diets... I said setting the goal of running a marathon was because I felt like I had been an "on a whim" kind of person. I would have an idea but when it was time for the rubber to meet the road I would "change my mind" (AKA quit).

By committing to running a marathon I thought I was going to connect with that part of me that could survive hard things.

But, you see...I had already connected with that part of me. When I was 7 years old I got intimately acquainted with that part of me that could live through and endure pain, that part of me that could carry on and keep going. In silence.

Running for most people involves turning off the "quit" voice. "Endure" means "to suffer patiently".

I had already learned how to "endure". I won't go into details, but my childhood wasn't idyllic. I didn't live in a sit-com family. I'll just leave it at that, but suffice it to say, I endured. I thought I had come out on the other side of that past life. I thought my tendency to quit hard things was somehow related to that past life and by learning to stay committed I was going to somehow "win".

While there is some truth to that...any good gamer knows there's always another boss to beat. There's always a harder challenge in the next level of the game. If you beat a boss that pounded on you in level one, in level two you'll encounter a boss that pounds on you AND throws fire. If you master that level, in level three the boss will do those things while the ground crumbles beneath your feet. There's always another challenge to overcome.

When Dwayne and I took over directing the marathon, we knew it would be hard. (Okay I knew it would be hard, Dwayne thought it would be "fun".) I knew it would be a whole other level of challenge. I knew it would spotlight areas of our marriage, areas of each of our personalities, that needed some "work". I actually didn't want to do it for THAT reason more than anything. Running a marathon is HARD. Directing a marathon is HARDER.

But when you are a person who doesn't do ANYTHING AT ALL on a surface level...when you are a person who searches EVERYTHING for the deeper meaning...when you are a person who takes lessons from EVERY SITUATION...hard things become that much harder.

But they also become more meaningful.

When I was young I learned how to endure physically. I turned off my mind and my emotions. I didn't think about the circumstance I was in, I certainly didn't feel the feelings associated with what I was being put through. As I got older I learned how to mentally endure. I reconnected my brain to my body and vice-versa. Along the way, I've had glimpses and hints of emotional endurance.

Everyone will tell you to "listen to your body" when you start running, and I will agree that's CRUCIAL. But it's also crucial to listen to your heart.

I am learning that a lot of the choices I've made in life have been in an effort to either protect or pump up my heart. (Not my physical heart, my emotional heart, stay with me here.) I think this new level I'm on now is all about listening to my heart and giving it a voice. It's about accepting love that's given. It's about standing up against offense. It's about hurting when I hurt, but also about showing love without abandon. It's about showing up and speaking up but also about being quiet and stepping back. It's about taking the lead and also saying no.

If my brain had not broken...if my body had not faltered...I might not have gotten to this level. I'm not interested in returning to a state of previous "normal", but I am interested in the recovery that involves the process of regaining something that was stolen from me. I'm not interested in returning to where I was pre-brain disease. I'm interested in leveling up.

Bring that on that next-level boss. I'm ready.

Thanks for stopping in and sticking around.

10 Years and Counting

Yesterday I "ran" my 10th straight Cotton Row...yes 10th! Funny I kept saying it was my 9th but when I went back to read my recaps from the previous ones I've run I realized I ran my first one in 2010...that was year one...plus 9 more years...10. Yesterday was the 9th anniversary of running it the first time.

The plan about a month ago was for Dwayne to pace me. It wasn't that I was going to try to run fast, I just wanted to run as much as possible and I wanted him to push me just a little bit.

Then he broke his ankle while hiking! It's called an avulsion fracture. Basically the ligaments that hold the ankle bone pull the bone and break it. It wasn't a complete break but it was bad enough that he's in a cast for a while, then a boot, then a brace. Needless to say, he's not running.

Then just over 2 weeks ago I got sick. It turned out to (likely) be walking pneumonia! That caused my plan for Cotton Row to change once again to just finish.

And then something wonderful happen! A good friend of mine (she needs a blog name...) offered to run with me! She is "the girl with the broken foot", the one who ran the Grand Slam (3 50ks and a marathon) while pregnant...she's a multi-time IronMan finisher...you get the picture, she's a really good athlete. But... she had not run in like 6 (9?) months...and maybe only once in the last year. She was slightly concerned she wouldn't be able to keep up with me....but I was getting over walking pneumonia, and I haven't been able to run "well" in three years!! I never had one doubt that she'd be just fine doing the 10K with me.

But, really...who does that? Who has the ability to "just go run a 10K" having not run in like 6 (9?) months?! I think that's amazing. To me it highlights her athletic ability.

The race start moved this year due to construction and I LOVED the new start/finish. Thankfully it will be a permanent move. It's a Memorial Day race that now starts in our BEAUTIFUL downtown park. I think it's the perfect place for the event. We started with another friend who was telling us she had been dealing with an annoying cough for NINE MONTHS!! I have to say that freaked me out since I had been dealing with my cough for over 2 weeks. Our plan was to run 3 walk 1. I was concerned because the race now starts going up a little hill and I was struggling to complete that first 3 minute run. I was very glad for that first walk break! Our "coughing" friend said she didn't need to walk so she ran on.

We very quickly got to where the old Mile 1 used to be...and I just as quickly remembered it wasn't mile 1 on the new course! But then a couple more intervals and BAM...1 down, 5.2 to go. It was HOT. Really hot. But, I wasn't coughing NEARLY as much as I thought I would. In fact, I don't think I coughed much at all. The worst thing for me was that my saliva seemed THICK. I kept having to spit out yuck. Now, I usually spit a lot when I run but yesterday it was much worse than usual. I don't think it's sinus drainage...it's like gunk was bubbling up from my lungs! (I know...gross.) But given the fact that I had not even been able to WALK the dog without having to stop for a coughing fit, I was VERY pleased at the trade off of spitting out yuck for coughing up a lung! (I am always VERY careful to pay attention where I'm sending my saliva and VERY mindful of the people around me.)

We made the turn by the cemetery and the 3/1 intervals went out the window. I did feel bad about that because my friend is a spreadsheet kind of gal. She likes order. A chaotic interval is HARD for the body to manage because you never know what to expect. But I was walking more frequently than the interval called for so I didn't feel too horrible about it. We stopped and talked with a friend for minute and then before I knew it we were at "the hill".

I realize this hill doesn't look so impressive on this elevation profile of the course, but it's steep. There's a homeowner who plays the theme from Rocky every year and a lot of people cheer runners on all along the way. I have run up it once in the race (several times in training). That was the year Dwayne was sick...the year the tree fell and the start had to be delayed for an hour! I was in good shape that year. This year I seriously struggled to just keep moving! We had friends who were supposed to be at the top of the hill with MIMOSAS...and they did not disappoint!!! I was very happy to see them. The shot of Champagne and OJ hit the spot!

You can see this course goes up about three miles and then basically down about three. The first downhill is just right in my opinion. It's not so steep that your knees take a beating. Then there's a little uphill bump and a second downhill section. That one feels a little steeper and a little longer. Usually it's okay but yesterday that one was harder because my legs weren't turning over quite fast enough to really take advantage of the elevation loss. I could tell I was losing steam.

We got to a new section of the course and it was weird to turn a different way! I had not been on any of the preview runs and I had not studied the map at all so it was all brand new. It was a little disconcerting! I have run this 10k race 9 times but I've run the course A LOT more than that. It's like a familiar friend that you don't have to WORK to be around. Someone with whom the conversation just flows. Someone you don't have to be on guard with. That course has always been comfortable to me. But this was new. Now it's not like there weren't hundreds of people around. It's not like it was at the Knoxville Marathon where I was all alone and had to pay attention to make sure I stayed on course. But it was new and different enough that it caused me to have to focus.

...the brain is interesting. Most people don't even realize when their brain isn't functioning the way it should. Because of what I've been through with my brain the last three years, I'm more aware sometimes than I probably need to be. Everyone has had the experience of walking into a familiar place but it looks different so it causes you to stop a bit and look around. Maybe a room was redecorated or something that should be there has moved. You know that momentary "wait a minute...this isn't right" kind of feeling you get? That's what was happening with me. I mean...this was a new course. OF COURSE it's different. But it was weird because my brain was much more confused than it should have been. Looking back I know what was going on.

The frontal lobe is a very energy hungry part of the brain. That's the decision making and willpower part of the brain. I was struggling from the start with simple math on the intervals. (I should have just used the lap button on my watch but I wanted to keep up with mile splits so I didn't want to hit the lap button...I figured it was going to be easy to keep up with 3/1 intervals but I was struggling from the 2nd interval.) By that point in the race (mile 5) I was having to keep bringing my brain back. It's hard to explain. It's like herding kittens.

It wasn't BAD. I think it was a mostly just normal end of race low glycogen thing that I was hyper aware of because of what I've been through. 

My friend is a lot like me in that she's competitive. Even being at the back of the pack in a "race" we were never intending to "race" we were both looking for people we wanted to get in front of. She pointed someone out and said let's just make sure we are in front of that person at the finish. It's not really a matter of "I want to beat that person" as much as it is a technique to push through. It's much like "run to the next mailbox"...it gives you something to focus on other than what's going on inside your body. And it's a moving target when it's a person. I do it EVERY. SINGLE. RACE. No matter if I'm "racing" or "completing". EVERY TIME. I think almost everyone does it but maybe I'm wrong. 

We quickly got in front of that person. As we rounded the last corner we had the realization that we had an uphill blip before a little downhill finish. I spotted another moving target to try to get in front of. Then my friend saw the time clock said 1:24:45 and she said something like "let's get in before it hits 25"...so I kicked.

I usually have a very fast finish line kick. For a long while it's been a toss up if it will be there or not. I didn't think it would show up given how slowly my legs were turning over in that earlier downhill section. But, when I pushed the "kick" button, it was ALL THE WAY there! I LOVE THAT!! I love crossing a finish line not being able to talk! I love that feeling so very much!! Even in a crazy slow "race" I was walk/running with the goal to "complete".

It was NOT my slowest finish (YAY). It WAS one of the (if not THE) most fun Cotton Row 10Ks I've done. I've never been much of a "running with friends" kind of runner. I ran with Daisy A LOT for a long time but we didn't do races together. (I don't ever remember doing a race with her in fact...that's kind of strange given how much we ran together.) I think that's more logistics than anything else. I run from home as soon as I wake up. I don't make plans to meet up with other people to run. I actually like running alone. But the last two running with friends experiences (this one and Bridgestreet Half) have been REALLY REALLY good. 

But I think more than running with friends I like to push my body.

I've decided that my goal for this next year is to get back to a sub 60:00 CR10K. I've only done it once. I'm confident I can do it again. Right now that's my A goal for next year. That means more running and SERIOUS hill training. That fits in with my B goal...better time at Knoxville Marathon. I think that goal will be "easy" with proper marathon training and hill work. I won't run 2 other marathons leading up to that race so a "better time" really should just happen as a product of planning. All the marathon training miles and hill work will flow right into working on speed for CR10K. 

The fact that I'm even ABLE to plan this stuff out is such a GREAT THING!!! If you've ever pulled a muscle you have an understanding of what it's like to get to a point where you are using that muscle without pain. Imagine if that injury were to your brain.... I know I talk about it a lot but it's something so crazy... you just can't even imagine what's it's like to have your brain not fully functioning. I'm just so glad I'm not at that place in life anymore!

Thanks for stopping in and sticking around.

I'm Not Okay

Well...here I am 34,500 mg of solu-medrol later and I'm really not okay.

I'm better than I was. I have had some exceptional days in the last 15 months. I've had days I thought this whole thing was going to be a bad memory I would never have to remember again. I've had days I thought I was back to my own version of normal. It hasn't all been good, but I have had a general upward trajectory that had me convinced I wouldn't be in the pit again. At least not with this same thing.

But.

I'm not okay.

Something is very wrong.


I am not have the same thought problems that I was before and that's a REALLY GOOD THING. I am not having the same level of word finding problems that I was before and that's a REALLY GOOD THING. You know I LOVE words. Not finding words is torture. :D  But I'm having really strange symptoms that come and go like ocean waves.

Dizziness
Nausea (that seems new, I don't remember feel that before)
Right ear pain
Shakiness
Head bobbing thing
Emotional craziness*
Irritability
"Paranoia"
Not being able to "get things done"
Memory issues (but this isn't nearly as bad as it was)
Weakness
Tingling/numbness in my hands and feet (and down my arms)
Extreme fatigue
Sleep issues (this is in no way correlated to the fatigue)
These weird electrical type pains that shoot down a limb at strange times
Electrical sensation in my tongue (this happened once-SO STRANGE)
Random swelling in my hands, knees, and feet (this doesn't seem related to food at all but who knows)
Pressure in my head (feels like my head is very full but it doesn't seem like sinus stuff)
Low back pain or neck/base of skull pain (not related to physical activity)
Intermittent blurry vision (this might be completely normal from what the eye dr told me but it feels very related and random)
Random pains...like I will be walking and all of the sudden a pain shocks me to the point I almost stumble, or I'll be sitting at my desk and a random pain makes me double over or suck in a deep breath.
It hasn't happened in a while (like a month) but there's a strange thing that happens where I feel like things are backward. A couple of examples: I was driving and really felt STRONGLY that I was on the wrong side of the car and the wrong side of the road. Last year it showed up when I would type-I felt like my hands were on the keyboard wrong. In both cases I would sit there and look, trying to figure out how it could possibly be different (there isn't a steering wheel on the other side of the car, there's no other way to have your hands on the keyboard).
My brain feels "hot" or like it's burning sometimes. Not like a fever, but like there's a fire inside of my head. I used to think this was psychosomatic because there's a book called "Brain on Fire" but it's not there all the time and it shocks me when it's there.

(https://www.youtube.com/watch?v=zRo8VgGvT08)


Let me be clear....the type of antibody that was attacking Susannah Cahalan's brain is NOT attacking my brain. Her condition progressed very rapidly and was severe. There are numerous types of autoantibodies and they attack in different ways. They didn't identify the autoantibody that is causing my trouble. (My spinal fluid wasn't sent to Mayo Clinic and HH doesn't run the same battery of tests. By the time I got to Mayo I had already had 7500mg of solu-medrol so the doctor said doing another spinal tap wasn't worth it because we already knew steroids were working and it might not even show up.)

My hope is to find out the CAUSE of this thing that is happening to me, not just to find a drug that will slow/stop the symptoms. A lot of doctors say it's impossible to find a cause but not all of them say that.

I have an appointment with a doctor in Chicago a week from Monday. Well, I have an appointment at the clinic and most likely I'll see both doctors! They do EXTENSIVE biochemistry testing. I don't know if this is the answer (or part of the answer) but I feel confident that this is a good direction for me right now. After the appointment I get the labs drawn and then it takes about 5-6 weeks to get results and analysis. So...we shall see.

All I can do right now is keep moving forward. It's like Ironman. It doesn't always feel good, but sometimes it does.

Thanks for stopping in and sticking around.


*So I feel like I should clarify what I mean by "emotional craziness" since if you know me, you know I'm a highly emotional being. I mean that sometimes my emotions don't seem to fit with what's going on. Specifically I am crying a lot. Randomly. Unrelated to what's happening or how I'm really feeling. This is different that my normal "cry at the simplest things" way of life. So far I haven't laughed inappropriately so that's encouraging I guess.

34,500

THIRTY FOUR THOUSAND FIVE HUNDRED: the number of milligrams of methylprednisolone sodium succinate (Solu-medrol) I have received over the course of the last 442 days!!

And, today was my LAST TREATMENT!!!!

To say I'm happy about this is an understatement.

The big question of "did it work" is really yet to be determined. All-in-all I'm doing MUCH BETTER than I was. In that regard (symptom treatment) I have responded to the steroids very well. I can't say right now if the put this condition completely in remission. It would be a while before I would know that.

I'm saying "would" because I am being proactive and have made an appointment with a functional medicine doctor for mid-July. I've had some strange "symptoms"* that certainly seem to correlate to steroid dosage tapering. (*Because they aren't as bad as they were I hesitate to really call the things that I've experienced as symptoms, but if I'm being completely honest, I'm pretty sure they are symptoms.)

Sure, it's pretty when it's in bloom...

...Let me tell you a story. The third house I owned had two very large green "bushes", one by the front porch and one out in the backyard. I didn't know what they were but they looked like giant weeds so I set about digging up the one in the front, GIANT root ball and all. My grandmother came to visit me not long after that and asked me about the beautiful hydrangea bush in my back yard! Turns out that weed was a very well established (and hard to grow) hydrangea bush that would have bloomed with beautiful flowers if I had just been patient enough to leave it alone!

...but so is this one!

In that same yard (after this experience) I saw what I thought was a lovely looking, berried, plant growing heartily. I decided to just let it grow so I could see what wonderful flowers would emerge.  ...until I found out it was (poisonous) "Polk Salad" when my neighbor asked why on earth I had not pulled it up.

Here's another story for you.  An athlete of mine a while back was training for a half marathon. One day she texted me to say she had been having some pain in her shin and she was going to the doctor. I asked how long this pain had been going on....weeks!! She just thought it was normal "working out"/"getting fit" pain but found out it was actually a stress reaction/fracture.

We don't know what we don't know. I don't know what I don't know. Functional/integrative doctors take a big step back from the "symptoms" and look at the person as a system of systems.  They strive to answer my all-time favorite question...WHY??!! Why did my immune system decide to attack my brain? Why does it attack my thyroid? If I'm simply treating the end result without knowing why I haven't solved the real problem. I get that sometimes you can't/won't know why things happen, but there really are answers. And if that "upstream" issue isn't solved my immune system might decided to attack something else next.  And...if it is perfectly in line now, having been beating down with the steroid treatments, then the functional doctor won't find anything to treat.

For now, I'm going to take a nap and then I aim to CELEBRATE!!!

The Truth

People will ask me "How are you doing?" And usually I say something like "I'm going okay" or "I'm getting better all the time." And, that's true, but it's not really the truth, at least some of the time.

The truth is, I'm not doing well. I'm struggling right now. I don't actually think the steroid treatments are working like they should. I walked into the locker room at the Y the other day and I didn't know where I was. My head feels like it's going to explode a good bit of the time now. I'm struggling to find words more than I would like. I'm having to check my calendar a hundred times a day to make sure I'm where I'm supposed to be.

But...I AM better than I was a year ago.

For as long as I can remember I have been a person who tried very hard to focus on the positive. If things were going poorly I would tell myself they could still be worse. Things can always be worse.


But the truth is that things could be A LOT better right now. And the truth is I don't know how to make them better. My MO has always been to simply focus on the positive and not let the negative pull me down. But my MO has also always been to focus on making things better.

I don't think those things REALLY go together.

Let me give an example. Say I take a test and I get a 98%. Focusing on the positive would be celebrating the 98%!! YAY! But I wouldn't do that. I'd look for the reason(s) I didn't make a 100%. To spend time focusing on that 2% is NOT focusing on the positive, especially if that 2% can't be made up or changed.

I think the truth is that I would be upset over the 2% FAILURE but I would put on a happy face and tell myself (and other people) that things could be much worse, I could be a 3% FAILURE!

There's something very disingenuous about that. To feel like a failure internally and to put on a happy face about that feeling of failure. But I don't think the answer is to proclaim failure. I am learning the answer is to maybe say "I feel sad that I didn't make 100% but it's okay"...if that's the truth. If that's not the truth then maybe spending some time working on making that the truth is a better use of time as opposed to working on ways to correct that 2%??

I'm sure you can tell I'm struggling here....and it's not the brain disease causing the struggle.

I think for me when I say "I'm doing great", I want that to be true. I recognize the truth of the statement. My situation could be SO MUCH worse that I really am doing great when compared to a lot of worse things that could be happening. But there is another very equal truth I (usually) don't say.... I'm not doing okay right now.

I don't want how I'm "doing" (my state of being) to be dependent on how I'm feeling. I want to be the master of my feelings, the master of my perspective. And, I've always held the belief that my perspective determines my feelings.

Feelings are fickle. Feelings are dependent on the circumstance. Feelings don't care that things could be worse, they just feel how they feel. Like unruly children.

That feels very chaotic and random. If my feelings determine my state of being (how I'm doing) then I can't be positive. I can't make it a great day. I can't embrace the idea that things could be worse because sometimes I feel pretty darn bad.

But what happens when a child is trying to express something and they aren't heard? They get louder and more unruly. Adults who don't understand this can work to suppress the child even more and you end up with a downward spiral that doesn't serve any good purpose at all.

Don't get me wrong, I don't think I go around trying to suppress my feelings. I just try to get them to line up with my beliefs about life. Things could be worse. I don't accept negative. I work toward being better, always. Feeling sad or hurt (or grieving over how things are not the way I want them to be) is just like that 2%...it's something to correct.

It's like there's this battle. I feel ashamed for grieving over the state of my health because I have friends who have much bigger health struggles going on right now. I feel like I have NO RIGHT to be upset over the little things I'm dealing with. At the same time I want to make those little things better and I simply do NOT know how. (Depending on who you ask there isn't a way to make them better--I do NOT accept that answer!) That causes a feeling of helplessness that I refuse to tolerate. Helpless is vulnerable.

Maybe the key is just feeling the grief I have over the state of my health and being honest that things are really not good without the judgement that I have no right to feel that way. Or maybe the key is to accept that 98% is really good and to completely celebrate how good it really is without trying to make up the 2% difference??

...The problem is that I don't really have a good perspective of what percentage of failure I'm at right now. I'm not dead so I'm better than 0%. But I'm certainly NOT close to 100%.

To not work to correct the percentage of "failure" I'm living in right now feels like giving up. To not grieve over the loss feels dishonest. I think I'm being stretched to allow both to be true at the same time. Grieve and work, but at the same time celebrate where I am and rest from all the work and grief.

A goal I've had for a very long time is to bring myself fully to life. The truth is that's complicated and messy and really very hard.

Thanks for stopping in and sticking around. I realized I didn't write about the RACE I ran in February!! I'll post a recap soon. It will be nice for this running blog to actually have some posts about running!! :D

Hard is not Impossible

Boy howdy does time fly.

A quick catch up. I went to Mayo Clinic and the diagnosis of AE was confirmed by one of the top neruo immunologists in the world. He devised a long term treatment plan that I have already started on. I had a three day round of IV steroids last Friday, Saturday and Sunday. Now I'll have one treatment a week for 11 weeks, then 1 every other week for 12 weeks, then 1 every 3 weeks for 12 weeks and finally 1 every 4 weeks for 12 weeks. Being on steroids means my immune system will take a hit so I have to take an antibiotic every day. Steroids can also weaken my bones so I have to take calcium and vitamin D. After the last steroid treatments my B vitamins were low so I'm also taking a B Complex. All that in addition to the Synthroid I have been taking for years. I take more pills than my (almost) 96 year old grandfather. ((He takes a B vitamin, and 3 prescriptions.))

Speaking of my Grandpa. In June I got word the he was given 1-6 months to live. He has brain, bone, blood and lung cancer. I was heartbroken. I went to spend time with him and my grandmother before I went to Mayo. I will be forever thankful for that time. When I returned home from Mayo I got word that my grandmother (not grandfather) had passed away unexpectedly.

I wish I could put into words how amazing my grandmother was and my grandfather is. Grandma was 95, Grandpa turns 96 in a few days. They lived in the same house my entire life. Up until just very recently my grandfather was still driving them everywhere they needed to go. My grandmother cooked their meals. They took care of themselves and each other and their little dog, Poncho (an elderly Chihuahua).

I have wanted to write up this post for a while but I just can't put into words all that I'd like to say so I stop writing and move away from the sadness and pain. But as I move away I am also tamping down the love and admiration I feel as well. So I'll just apologize now that this post will not be neat and tidy. It will be a jumbled up mess of emotion and thought...pretty much how I am feeling right now.

While I was in Dallas my grandmother fell, twice actually. She was in excruciating pain. The dr thought she had sustained a compression fracture. That would have been ideal in the grand scheme of things because there is a procedure they could have done that would have INSTANTLY taken her pain away. But, it turned out that she had broken her tail bone. There was NOTHING they could do to help, other than give her pain meds. The big down side to pain meds was that it caused her to basically stay in bed all the time except when she had to go to the bathroom.

When we are younger staying in bed when we are sick is just what the body needs to regenerate. We get rest, the body recovers and we are better than ever. But there's a tipping point along the way where being in bed is not good for us. (When my brain is working better I'll have a great analogy for this but right now I don't have it.) Suffice it to say my grandmother had tipped that point long ago. Being in bed was more harmful to her than good. Being out of bed was incredibly painful. But when she found out being in bed wasn't helpful, she forced herself to get out of the bed every day and move around at least a little bit.

My grandfather is the same way. The first week I was there he had become very constipated. (When you get older the digestive system slows way down.) I'll spare you the graphic details but this caused a cascade of bad events. But he too wasn't one to be relegated to the bed. He forced himself up and out every day, even if it was just so he could fall asleep in the recliner. He told me on more than on occasion "I have to get up and move, eat and get stronger so I can get better."

Let me remind you, he has cancer all throughout his body. He is about to turn 96 years old.

And, he is living life to this fullest.  EVERY. SINGLE. DAY.

Why? Because there is life left to live.

Hard is not impossible. Down is not out. The count of 8 is not 10...

Do you need some motivation for today? Check out this video: https://youtu.be/UNQhuFL6CWg



Thanks for stopping by and sticking around.

Hello 2:30, My Old Friend

Tuesday morning I had a full on anxiety/panic attack. I've experienced something similar on a smaller scale before but there was a reason. I don't remember what it was, but I do remember understanding why it was happening. Tuesday was different. Now, let me be clear, I have (had*) a lot going on. I have (had*) a lot of responsibilities that were coming to a head Tuesday morning, but it wasn't very different than usual for me. I always have a lot plates spinning at one time and that's how I have lived my whole life.

I remember "my previous life" as an insurance adjuster (yes, that was what I did before I met Prince Charming). I always had an overload of claims going at one time. I worked for a company that believed adjusters should not specialize so I might have a house fire and a school bus accident come in on the same day. What happens when you do a good job at something? You get to do more of it! I'm not tooting my own horn, but I didn't do a good job, I did an exceptional job. I won our district's "Adjuster of the Year" twice, Subrogation Adjuster of the Year, and the State Adjuster of the Year. I did an exceptional job. We had three adjusters in our office and a vehicle appraiser. One of the adjusters was NOT doing his job. He was fired and the majority of his workload was given to me because I was the senior adjuster in the office. I went from about 40 claims on hand to over 100 overnight. I handled them. Well.

I guess there was some fall out from doing my job very well. I failed at marriage. But I think I had a lot of help with that. It takes two to tango. But, to be clear, I sucked as a wife. But, about 2 weeks after he left we had a MAJOR hail storm in my county. It was the largest single county catastrophe in Arkansas ever. In my county. Two weeks after my husband left me. I was a single mother with a HUGE mortgage to pay (alone, because he sucked as a human) and I watched the news that night in horror as hail stones the size of softballs were hitting houses and cars all over my county. I remember the scene so vividly. I had brought home all my files that night, to get caught up. I was behind a little bit (because my husband had left) and, in true Dana fashion after my mom duties were done I put my head down and got my work duties caught up. And then the storm hit.

I was supposed to take my kids on a vacation to Florida the next week. Well, it was supposed to be a family vacation...and it was going to stay a family vacation, just a smaller family. That was cancelled. I went from being caught up to completely drowning in claims overnight. I got help (A LOT of help), but I handled what I had to handle. Fairly well. At least I came out of it on the other side of the storm.

Last fall, right before all the "health weirdness" started, I took on a huge responsibility. I was nervous about it, but excited at the same time. (It doesn't matter what that responsibility was; I'm keeping it general so this can apply to anyone reading...) This was on top of my already heavy load, but I felt like I could handle it. And I think I could have...before my brain was attacked by my immune system.

Since last fall I have had to give up and let go of several races I was planning to do: an "easy" 50K, a particularly tough 50K, a 50 miler, and my very favorite 25K and weekend after next I'll have to give up a 2.4 mile swim in the river. I've had to give up some opportunities to coach some amazing athletes. I've had to give up giving some swim lessons. I've had to hire someone to clean my house. (Okay, that one I'm not sad about!) I've had to sleep A LOT more than usual. But that doesn't get to be at night, like a normal person. I sleep like a newborn. In chunks throughout the day and night and sometimes very fitfully.

2:30. WIDE awake. 10am, I need a nap.

Now, I get that insomnia is a pretty common thing. There are things you can do to help sleep better. And, your brain works better when you get good sleep. And just not sleeping can cause a lot of health weirdness. Trust me, I have gone down that road a little ways. This is not the cause, this is a symptom. Solving the sleep issue doesn't solve the brain issue. It's the other way around. Surprisingly when I took my steroid treatment I slept like a baby (until I got off the steroids). That's because the steroids put a quietus on the antibody attack and (I think) calmed the inflammation in my brain, allowing it to work better. (Your brain controls your sleep pattern...)

My brain simply isn't working like it used to...like it should.

And, because all stress goes in the same bucket, after I ran the 10K that my body was not ready for on Monday I had a full stress bucket Tuesday morning when all of my usual responsibilities came pouring in. I had an overflow.

Imagine a juggler. She can juggle a lot of things REALLY WELL. And then she breaks her hand. She can still juggle with one hand. She's done that as part of her act for years. But she can't juggle as many things, and can't do it for as long as she could juggle with both hands. She needs more frequent breaks to rest the good hand. Yup...that's a pretty good analogy of where I'm at right now/

I am part of a Face Book page for people with all forms of Autoimmune Encephalopathy. The admins post a lot of current research and helpful information. Sometimes they post it in the form of memes. Tuesday as I was in the midst trying to process what was going on with me they posted "A letter from your brain" (click to enlarge).

I don't know if what I'm experiencing is from the attack of antibodies, or if it's lingering effects of a previous attack. I'm hoping the trip to Mayo will help sort all that out. And, more than that, I'm hoping they will have answers on how to get me back to juggling chainsaws and flaming swords with both hands!!!


* So why did I say I "had" a lot going on and I "had" a lot of responsibilities?? Well the thing that I put on my plate last fall has been removed!! That's a big relief.

For my local friends, I'm not directing Pesky Piranha anymore this year. It's been returned to it's previous director. I was getting the job done, but at a great cost and not as smoothly as I would have liked. Dwayne offered to step in, but he's never directed a race and there would have still been a great amount of the weight falling on me. It's ever so slightly sad, just like not being able to participate in the races I had registered for. But unlike the races I was going to participate in, this involved so much more than just me.

Thanks for dropping by and sticking around.

By the way, if you have ever wanted to learn to juggle, I found a great site with several videos right here: http://monkeysee.com/juggling-two-balls-in-one-hand/.  And, let me say, when you google images of "juggling two balls with one hand" you will not like what you find.... :D