Fire and Rain

Dwayne wrote a book before I met him and he's re-written it many times since then. It's almost not even the same book anymore. The working title at one time was "Fire and Rain". It's a really good book but not why I'm writing this post.

Yesterday I ran the Monte Sano 15K. It's the third time I've run that race, but this year there was a totally new course. In 2011, the first time I ran it, I finished in 1:24:49 (9:06 pace). (I raced it as part of my training to run my first marathon. Just a few weeks later I raced the Huntsville Half Marathon in 1:56:30 (8:54 pace).) The following year I ran with a friend and athlete I was coaching as part of her training plan. I think we finished in something like 1:35.

Yesterday I was thrilled to finish it in just under 2 hours (just over a 12 minute pace).

In Dwayne's book there is a part where a village gets completely decimated by a fire. Two of the villagers are awakened the next morning by raindrops hitting their faces.

Yesterday as we were waiting for the race to start we heard a rumor...the race was going to be delayed by about 20 minutes because there had been a fire on the course that was going to alter the route. My first thought was the poor people whose house was on fire. I didn't care much about the race at that point. But since I'm not a fire fighter, there wasn't anything I could do to help put the fire out. It wouldn't help that poor family if I decided to get back in the car and go home. Just moments later it started to sprinkle rain. As a race director I really felt bad for the RD...fire and rain on top of having to run on a new course this year, on top of it being the coldest day we've had since like April. Poor guy.

Race directors are first and foremost problem solvers. Sure there are hundreds (if not thousands) of details to attend to in order to pull off a race, but the main duty is to solve problems. Cooler weather and rain isn't really an RDs problem (at least not for a 15K...a longer distance race has to deal with issues like hypothermia-for your participants and volunteers). Fire on the course is a MAJOR issue-you not only have to reroute the runners, you have to make sure everyone is on the same page (police, aid stations, split timers). About 20 minutes after the originally planned start we found out they were returning to the original course, but about 15 minutes or so later still.

I had asked Dwayne to run with me, to pace me to a faster finish than I would have had if I were alone. I signed us up before really thinking about the fact that he had not run longer than about 4 miles since he broke his ankle (in May) and I had not run more than 5 miles since like April. I signed us up when I was feeling pretty spunky. I signed us up because the race was going to be on a new course and they were, for the first time ever, giving out medals!! (I'm all about the bling!) But by the time race morning rolled around I was really nervous. Would we be injured? Would I even be able to finish? I've been EXHAUSTED lately. Like bone weary tired. (Auto immune fatigue is unlike any other fatigue you can ever even imagine unless you've been through it.) Was a silly medal even worth it? NINE POINT THREE MILES.

Then there was the fire. Then there was the rain. (Okay, it didn't really RAIN, it sprinkled...and it didn't last long.)

After some announcements that could not be heard by anyone except the runners in the very front, the gun went off and we were moving. I had told Dwayne I really wanted to run 3 minutes walk 1minute...no matter what. But just as we started he suggested that, because the course is rolling, we should keep that interval, but also run any downhill. I begrudgingly agreed. I had to laugh because I remembered telling my friend/athlete that her plan was to charge every UPhill and coast flats and downs.

As we started my left shin started complaining. I knew I just had to stretch it. I didn't do ANY kind of warm up and I had not run in over a week. Heck, I had not done any real exercise in over a week because I had been traveling. I knew once I warmed up it would (probably) be just fine.

We started playing leapfrog with the other intervalers. Dwayne was certainly pushing the run pace faster than I would have. I didn't look until just now, but our running pace averaged about 10:30-11/mile. My left foot hurt...like felt like it was on FIRE...my legs got seriously tired...my left glute muscles felt like they were on revolt. I felt dizzy a few times. I seriously doubted if I would be able to finish...but only for a fleeting moment. I've never quit a race I've started. (There have been races I haven't started, but I've never quit.)

The course was really fantastic. It's rolling and winding and you are almost always seeing the runners who are ahead or behind you. I kept telling myself that my A goal for next spring is to run a faster Knoxville...but as I was running I felt silly for even setting the goal in the first place.


In Dwayne's book the two villagers who survived the fire were completely changed by it. The rain the next morning was like a new fresh start for both of them. But it's not like they just left their old lives behind, forgotten.


I'm not going to lie...I'm still holding on to my "old life" (pre brain disease). That life when I trained hard and was able to set goals and race. I keep thinking that I will get back to that athlete I was. I just have to be patient. But the truth is, just like in Dwayne's book...I really need to start accepting that I won't ever be the same. When we were waiting for the race to start yesterday morning, we didn't know what was going to happen...would the course change? How long would we be delayed? Would it rain harder?  There was no reason to believe the race wouldn't happen, it just might not look exactly like we expected. There's no reason to believe I have to give up "training" and "races" but I need to start realizing I am dealing with a new reality now.

I've seen fire and I've seen rain. I've seen sunny days that I thought would never end. And I've seen lonely times when I could not find a friend. But I always thought that I'd see you again.

It might seem silly...but I'm sad.  And, at the same time I'm not fully ready to let go of what I want. I want to compete. I want to train. I want to have a faster Knoxville. I want to finish IMChoo 70.3 in May in under 6:30. I want to compete in another IM. I want to BQ. I want to run a 50 miler and a Hundred.

I just don't know what's the right thing to hold on to.

I think the answer is to be patient in the not knowing. To keep looking forward (not back) and to keep pressing onward. Just like in yesterday's race. I didn't know what might happen, but I knew I wasn't going to quit.

I actually finished quite strong. I was able to push the pace the last .1 mile from a 9:30 pace down to an 8:14. That doesn't make me sad at all.



Thanks for stopping by and sticking around.

Trying New Things

A couple of weeks ago I tried something new! Cross-country running!

Sure I've run trails before, lots of trails. And I've run at our old "Cross Country Park" but until that day I had never run "cross country".

It's different. If you've never done it, it's like running on the fairway of an old golf course. Funny because that's exactly what it was for me/us! Huntsville morphed it's old municipal golf course into a multi-use park that included a cross country run course. To officially open the new park a big Cross Country meet was held and they included a "community run" which I decided to enter.

When I signed up I didn't really think about the fact that this would be a new thing. But as the race drew closer I became more and more nervous. I asked Dwayne to sign up to run with me to pace me to a "faster 5K" (which he did). I was really glad he was with me. It sounds silly to be so nervous but I think the truth is I'm either having a little symptom flare of my brain disease or, as a friend put it, I'm at "critical mass" on stress and this little thing was a bigger thing in my head than it needed to be!

We got there in time for me to pick up my bib and to sort of warm up, and plenty of time for me to stress over the idea of doing this new and foreign thing! It wasn't long and we were lining up. If you look at the picture you can see the start is a long straight chute. It was designed for high school/college cross country races so to make the start more fair you can't have a big difference in start times. Each school/team has a starting spot. (If the start was like every other race start you could have a good :30-1:00 difference in start times between the first and last person to cross the start line.)

I knew I would start out too fast. There weren't a lot of people doing the race, I didn't want to start off in the very back even if that's where I eventually ended up. We were about a half a mile in and I saw a group of girls women I know. They are all faster than I am right now and all in MUCH better shape, probably training for a marathon....but I made it my goal to stay with them. Okay, so my real goal was to pass them, but I knew that wasn't going to happen. They were doing intervals so early on I thought at least staying with them was realistic. Every time they would walk I would start to close the gap...and then I would have to walk. They were running faster so throughout the 3.1 miles they slowly inched away.

We played a bit of leap frog with and older man who, like Dwayne, had run cross country back in college and this race was bringing back a lot of memories for them both.

I was struggling not so much with breath as I was with sheer energy level. It feels like I just don't have any oomph in my body. Like my muscles are all on vacation. My doctor thinks my adrenals just aren't working properly. She said when I was on steroids my adrenal glands basically retired. After getting off steroids they were told to come back to work but they are resisting that. I've been on an adrenal supplement but it's probably not strong enough. Also my ferritin levels are low. Ferritin is a protein that stores protein and releases it when your body needs it. The question is WHY are those levels low...we haven't figured that out. The short term answer is to get iron infusions, and I've been needing to get one for months. I've just put it off because it's not crucial. But no doubt I would be able to train (and in this case) race at a higher level if I got one.

At about mile 2.5ish we picked up a 15 year old runner who was walking. I'll call her coach because as we got to talking and she found out this was my first cross country race, she began to coach me! It was the cutest thing. She explained to me how I needed to relax on the down slopes and pick up my knees on the up slopes. She talked about mindset and breathing. 

I know from my own experiences, she was getting as much out of it as I was! 

One of the gals I was chasing starting walking and we caught up with her. She's a good bit younger than I am but her heart rate was SKY HIGH. She stayed with us a little bit but when we decided to pick it up at the end she held back to let her heart rate slow down a little bit.

Dwayne was still thinking I might be able to catch the other gals but I was giving all I had but they were still pulling slightly away. It was funny because they were just out for a training run. They ran miles before and after this little 5K. But I was (sort of) actually racing them. I ended up finishing just 30 seconds behind them so I was VERY VERY pleased given where I've been and how I've been feeling. It's the fastest 5K I've done in like 3 years! (33:21) I think if it had been on the road with the same terrain I might have been able to get that time close to 30 minutes!! That is VERY encouraging!!

The course was WONDERFUL. I will say at the time I didn't think I was a big fan of cross country running. It's harder than road running (slower and more work) but it's not as hard as trails (not as slow or as physically/mentally taxing). My legs and ankles weren't really sure what was going on! But, fairly quickly after it was over I decided I actually LOVED it for all those reasons! In fact I plan to go back to run it again soon. I think it's going to feel very weird to run the course alone since it's such a big open field, but I really liked the more-challenging-than-roads-but-not-as-challenging-as-trails aspect of it.

The next thing coming up for me right now is Little Rock Marathon but goal number one is a faster Knoxville Marathon next year....which means hills. I've really got to figure out what's going on with my ferritin and adrenals before then!

Thanks for stopping and and sticking around!

:D

Best Laid Plans

A lot of people ask me what my training consists of these days.

Well...as usual, this is what my "planned" week looks like:

• Monday-teach 5:30am Spin, swim for 30-45 minutes, get on the treadmill until 8:45, then go to Boot Camp (strength training for an hour)
• Tuesday-5:30am boot camp, spend time either outside "running" or on my treadmill at my desk*
• Wednesday-5:30am boot camp, swim, treadmill
• Thursday-5:30am boot camp, spend time either outside "running" or on my treadmill at my desk*
• Friday-attend 5:30am Spin, swim for 30-45 minutes, get on the treadmill until 8:45, boot camp
• Saturday-treadmill or "running"
• Sunday-rest and prep for the week

Now...I know what you're thinking. It IS a lot. AND I haven't done 100% of that planned week even one time! I'm paying VERY close attention to how I'm feeling and VERY close attention to my heart rate variability**.

I'm walking a line so fine I don't even see it clearly most of the time! If you've ever tried to push yourself after an injury, you probably know what I'm talking about. 

In my first appointment with the neurologist who diagnosed the Autoimmune Enchepolapathy, I rattled off all the things I had written down as "symptoms". I felt like a crazy person. None of these things seemed to fit together. One of the strangest ones, or at least the one that made the least sense to me, was my confusion with left and right. I'm not just talking about telling someone to turn right and pointing to the "other right". 

When I would put my hands on a keyboard to type I felt like they were crossed or upside down. I would stare at my hands and move them around trying to come up with any other way to put them on the keyboard that would make sense. One night I was reading a book and had the distinct impression I was reading in the wrong direction. I kept looking at the page trying to figure out what was going on. I had a discussion with Dwayne about it as if I needed to be reminded that it really was correct to read a book (written in English) from left to right, up to down. (That's the night he told me I HAD TO make an appointment with a neurologist.)

When I described all of the weirdness to Dr. Hitchcock, he said those were pervasive symptoms (all over the brain as opposed to being in one area) which led him to believe it was Hashimoto's Encephalopathy. (They don't use that term anymore because they have determined AE has no connection to Hashimoto's, an autoimmune disease of the thyroid.) 

When I look at this chart (taken from the International Autoimmune Encephalitis Society website) I can better appreciate what he was saying. I had symptoms from every area. I'm sure if you read that list you might wonder if something is wrong with your brain too. Let me assure you, if there is something wrong, either you will know or the people closest to you will know. Everyone forgets where their keys are or the word they are trying to say from time to time. Everyone can get an "earworm" stuck in their head, but not usually for days (and nights) at a time.

I fully believe I am mostly recovered now. But when I push too hard (mentally, physically, emotionally) I can have "symptoms" pop up. Imagine you had shoulder surgery. You completed PT and were back to "normal life". But then you went and played tennis all day. Your "recovered" shoulder would let you know it wasn't happy. My brain does that.

I'm not going to lie. It's VERY hard to listen to it sometimes.

I have this thing I say all the time: "ALL stress goes in the same bucket". Stress to the body (workouts, injury, illness, poor sleep), the mind (learning new skills, projects or jobs that require a lot of mental effort), the emotions (going through therapy to deal with "big T" traumatic life events or the loss of a loved one), the will (not being able to do the things you REALLY want to do), the senses (living near a nasty smelling dog food factory*** or hearing loud explosions multiple times a day or living with chronic pain)...all that stress adds up in the same column.

You can't separate one category from the other. You might think that having an incredibly stressful job while you are going through a nasty divorce can be balanced out by killing yourself in the gym (to "work out all that stress"), but you are most likely wrong. Those are all three STRESSES. Relaxation/meditation, deep breathing, massage, LAUGHTER...those are things that go in the other column and will take stress out of the bucket.

Most of the time when overall stress ramps up, and is not properly dealt with, bad things start happening. You start not being able to sleep. You get more emotional/irritable. You might "stress eat". You might have headaches, stomach aches or get sick easier. You might realize you are more forgetful. When stress ramps up in a vulnerable place (an old injury for example), you feel it. You will probably notice it, but you might not take notice of it.

There's another side to that equation. In order to get stronger, systems HAVE TO be stressed. For a muscle to be stronger you have to lift heavy weights. A healthy body will make adaptations in order to handle "more". But these changes don't happen in the moment of stress. The changes happen in the moments of rest.

When a system is under fire, all resources are thrown at the "problem". It's when the pressure is removed that the system can adapt and adjust in order to handle that situation better. This is how we learn new skills, how we handle more of what's thrown at us. 

The art of knowing how much pressure to apply and how much rest to allow is the art of "coaching". A good guitar instructor would never tell a new student to practice 8 hours every day 7 days a week to start out. That teacher knows calluses have to be built up on the fingertips. If someone new tried to play that much, their fingers would probably split open!

But, NO ONE has the opportunity to know your "systems" better than you do. I say "has the opportunity" because we all have our own blind spots! We can want to get back in shape so badly that we conveniently ignore clues that we are overdoing it until it's too late. (Or we can want the Oreos so badly we overlook what it's doing to our midsection!)

Taken from the IAES website.

I have been paying close attention to myself, but I don't always know how to translate what's being "said". Is that headache from stress overload or just a headache? Is that dizziness my brain telling me something or is it a sinus issue? The truth matters but the answer is the same: some kind of "rest" (or subtraction from the "stress" column). Extra sleep, laughter, massage, deep breathing/meditation...

My body might be itching to go work out, but if my brain has had enough, my body is going to have to wait. Think about that shoulder example earlier. If you just had surgery it doesn't matter how much you love to/want to/"need to" swim. It doesn't matter how fit you are cardiovascularly, or how strong your legs are. You will not be able to use that arm to swim (right now).

Sure, where there's a will, there's a way. I'm the queen of "but you can cover incisions with waterproof tape, you can immobilize the arm and do one-arm swimming, you can do drills that don't require that arm...". There's "always" a work-around. But when it's the brain, there aren't really work-arounds that work.

I imagine it's much like someone who has an "untreatable" injury (no cartilage in the knee or a torn labrum in the shoulder). They can push, but they have to know when to back off. (Who else starting singing Kenny Rogers' "The Gambler"?? Surely not just me.)

Thank you for joining me on this journey!

:D

*My treadmill desk...the treadmill only gets up to 2mph. I usually have it on 1.5 if I'm typing something that requires a good bit of thought.

**HRV-there's a lot written on HRV but here's a great place to start if you are interested: https://elitehrv.com/what-is-heart-rate-variability

***I have personal experience with living close to a dog food factory. Trust me when I say you don't have to live very close. 

#2018Renew

I have big goals for 2018.

I finally feel like I'm "recovered" from the ants I had in my brain for almost two years. I'm ready to shed this extra weight I put on and get down to some serious training.

But (there's always a but isn't there?!) I know if I hit it too hard and/or too fast I'll be back at square

yes, it IS creepy...

one quicker than I can blink an eye.

Autoimmune fatigue is unlike any other fatigue there is. If you have any autoimmune disease, you know what I'm talking about. If you've had babies and have had long periods of time where you aren't able to get good sleep, you still have NO IDEA what I'm talking about! It's just not the same. Add to that an inability to use words well, to form coherent thoughts, dizziness, emotional volatility, muscle weakness, severe anxiety, the most intense carb cravings I've ever experienced in my life (actual quote: "someone is going to lose an arm if I don't get a Kit Kat right now"), and a level of brain fog that I can't describe and you'll have more of an understanding where I've been.

I want to be clear, what happened to me is SMALL. Cancer is big. MS is big. ALS is huge. The list could go on and on. My little two-year blip is TINY compared to a lot of things.  But it was a big thing in my life. It was a major life disruptor. It was a plan derailer. It was a HUGE obstacle for me to overcome. I've had some pretty big hurdles in my life and this one is at least in my top three. (I'd really like to keep it that way.)

Many friends have said they had no idea it was as bad as it was. That's a good thing. I wasn't bedridden for two years. I continued to coach. I continued to teach Spin (for all but about three months and some odd days I had to get subs for various reasons). But I wasn't fully me. I was disconnected from people I love. I was less communicative. I was MUCH less able to be out and about in the way I like to be. I wasn't able to cook and keep my house moderately clean the way I was before. (That's not saying much...but that made the loss all the more difficult!)

Thank goodness I'm off that ride!

The last two years are very much a blur for me. I can look back and know what happened but it's like I was removed from it all. The thing that hurts the most is that I wasn't able to fully appreciate the time I got to spend with my grandparents before they both passed away. I can't fully explain how it feels to be separated from yourself but imagine the most distracted you've ever been and then try to do the hardest task you can fathom, but you aren't allowed to put attention toward that task.
And attempt that task in a room with all your worst fears. It was horrible.

AND (there's not always an and, but there is this time)...I know most people dealing with AE have it MUCH worse than I did. Many of them have seizures, psychotic episodes, hallucinations, catatonia. Some can't speak at all. A shocking percentage die before they are properly diagnosed and treated. The fact I got to a doctor who knew what it was and that I got treatment that worked so quickly was life-saving.

Now that I believe I'm on the other side of that health mountain, I'm ready to move forward in typical Dana fashion....full speed and reaching for the outer limits of the universe. (Some people say "the sky's the limit" or "I'm reaching for the moon" but why be myopic?)

For 2018:

• I want to participate in a race a month
• I want to train at the level to which my body will appropriately respond
• I want to feed myself healthy, life-giving food
• I want to honor where I am and what my body/mind/will can handle
• I want to be kind to myself (and others)
• I want to write more.

Yes, I know all by one of these are not measurable goals and they aren't specific. But goals don't have to be. Objectives do. Goals are the big picture, objectives are how to get there. I also recognize these goals might seem small-fry compared to where I have been before.

I'm not who I was. I have a new perspective. I have a new lens to look through. I'm in a very good place.

If I can accomplish the last one on that list, I'll share more with you about the objectives of the others in the coming months.

2018 is going to be a year of renewal for me. Will you join me? Will you share your (big picture goals) or your (specific) objectives with me? You can either comment on FaceBook, in the comments section below, or you can send me a message or email. When we make our intentions known to other people we are putting a stake in the ground. Why don't you go ahead and plant a stake today?

If you are new to my blog, please reach out to me and let me know. If you've been here from the beginning or for a while, thanks for sticking around!

Make it a GREAT day!!

:D

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!!!

Number 8

Tomorrow I'll run my eighth Cotton Row 10K in a row. That's shocking to me. I've been a "real runner" for EIGHT YEARS!! What's funny is that right now I'm not running a lot, but I'm still a real runner.

Well...let me be clear. When I say I'm not running a lot, I mean straight running. I walk run now and it's slow but last Saturday I ran 7.5 miles. The Saturday before that I ran 7 miles. I've run about 40 miles in the last month. On top of that, I'm teaching Spin twice a week and I've been swimming a couple of times. It's not like I'm on the couch. But it's interesting that I do certainly still feel like an athlete who has had to be sidelined a bit. All things considered, I'm really very happy with where I am physically.

I'm right at 20 pounds overweight, I'm slow as cold honey, and I'm very weak compared to my trained self...but I'm still moving.

I'm really looking forward to doing this race tomorrow. But I wouldn't be honest if I didn't also say I'm looking more forward to next year's race!! :D

Thanks for stopping in and sticking around.



PS: Steroid update--I get my LAST TREATMENT three weeks from the day before yesterday (two weeks from this Friday). I'll be so very glad to have these OVER. I still really don't know if they have worked or not. I don't always thing they have, but I am thinking so much better than I was a year ago I can't help but think they have. I'm taking big steps to try to clean up my diet and to get my gut health on track, and I'm regaining fitness, so I'm cautiously optimistic about what's to come.

The State of Me Address-Part One, Weight Gain

About half the time I feel positive and encouraged. But in the midst of that positivity I can't help thinking I do not like where I am right now. The state (of being) I'm in is just not where I WANT to be. Some of what's going on is NOT within my control and I am powerless to change those aspects of the reality I am living. Although many things are within my power to change, the lines are sometimes blurred.

I want to give an overview of where I'm at right now. This is more for my benefit than anything else but I believe when we are open and transparent, people can not only help us but can also be helped by us. This overview will be in several parts and will spark several other posts along the way.

First off...I'm FAT. That word has gotten a bad rap. The definition of "fat" (as an adjective) is having a large amount of excess flesh. "Flesh" is the muscle and fat between a person's bone and skin. "Excess" means an amount of something that is more than necessary, permitted, or desired. ("Large" is relative.) I (currently) have (considerably) more flesh than I desire. So, I'm FAT. There's no shame involved in that sentence.

excess...that's what this is a picture of...excess

I've gained a solid 20 pounds since I stopped my "Whole 30" (30 pounds if comparing my lowest to my highest weights). For the record, I didn't like the amount of "flesh" I had even THEN. Until recently, I wouldn't blame the gain on steroids. I blamed it all on myself, because the food I have eaten between then and now.

My diet right after W30 was an experiment that was largely successful (pun intended). I wanted to see if I would have any "health issues" by eating certain foods. In the past when I would eat dairy* I would end up with sinus issues. Garlic* gave me weird swelling and pain. Gluten* and/or sugar* seemed to cause negative emotions/irritability and swelling. Tomatoes* caused headaches. Sweet potatoes* resulted in me swelling up like a blow fish! (*Okay, not EVERY time I ate these foods, but enough that I saw a pattern.)

Since starting the steroid treatment I have been able to eat ALL those foods without any of the symptoms popping up. Those issues had been going on for about 6 years. They might go away for a little while, but they always came back. Until now.

Steroids suppress the immune system. Suppressed immune system means suppressed immune reaction. To me this is proof positive those reactions I was having really were immune reactions. While I'm happy to be able to eat ALL the food with no immune reactions, almost none of my clothes fit! When weight gain is the "only" side effect of eating all those yummy foods, it makes it a little harder for me to not eat them! (Much easier to not eat cheese when you can't breathe well afterward!)

Almost the whole month of June I was in Dallas visiting my grandparents (who have now both passed away). I then went to the Mayo Clinic the first week of July, and then back to Dallas for my grandmother's funeral. I didn't weigh myself the whole time I was gone. I also only wore "comfy clothes". I slowly put on pounds without having objective measures staring me in the face. When I got home I had surpassed my all time heaviest weight (other than when I was pregnant) by about 2 pounds. The actual number doesn't matter because that number could very well be a "goal weight" and/or represent health and vitality for some people. What's important is that it represents "completely out of control" and "undesirable" for me. For almost five months I have bounced all around that number, but it has become a solid average.

I do NOT like that average.

I'm torn because I want to believe I have control over my weight. That makes it my choice to gain or to lose. Let me be clear there are TREMENDOUS, HUGE, MASSIVE, HERCULEAN cravings that come with steroid treatment. Steroids also cause water retention. But it's my choice if I eat all the food or not. I can give in to the cravings or I can fight them. Yes, the battle might be made harder because of the steroid treatment, but I want to believe it's MY battle to fight.

What I'm being told, by those who are in the know, is that it's really not completely my battle. I can fight valiantly and I will still gain weight (until I'm off the steroid train).

However...I can at least slow the roll if I do all I can to do the best I can.

I think it's like aging. My grandfather's last months were spent in an assisted living place. One thing that was remarkable to me was to see the fighting spirit of so many people living there. There was a woman in a wheelchair who would walk her feet along the floor, making several laps around the place each day for her "exercise". (I found this out when I mistakenly thought she was trying to get somewhere and offered to push her.) Many residents played checkers and put puzzles together, not simply as something to pass the time but as a way to keep their minds strong. They were living life as fully as possible given their circumstances.

Then there were those residents who seemed to be just giving in to the aging process...just killing time until inevitable death. I call that NOT living life.

There are conditions that can hinder a person's ability to sustain a "healthy" weight (what exactly "healthy weight" is encompasses A LOT of factors, not the least of which is psychological). Medications and medical/physical conditions, amoung other things, can adversely impact weight. Weight gain and/or the inability to lose weight is also a symptom of autoimmune disease in general. Steroids affect metabolism and how the body deposits fat, particularly increasing abdominal fat. They also SIGNIFICANTLY increase appetite.

But that doesn't mean I should just surrender to it and give up the fight.

Eating/not eating used to be about weight control. Then it became about fueling my body for workouts. I don't know what THE healthiest way for me to eat is, or what THE healthiest foods are for me to eat. But I do know eating all the junk I have been stuffing my face with is NOT the healthiest or the most LOVING thing I can do for my body. Having a plan makes the choice easier. So...I'm officially back on Whole 30. Today is day 5. I get steroids tomorrow. I don't know if I'll actually be able to fight the cravings. But that's the plan.

Thanks for stopping by and for sticking around.
:D

Scarecrow to Pupa??

Several people have asked me to describe what has happened/is happening to me.

My initial symptoms were a bit different from what I've had in the last couple of months. I think the treatments I got early on changed things. Maybe they helped in ways I didn't fully appreciate because I was still having issues?

Some days I'm the Scarecrow.... It feels like there's nothing but straw up there. I'm scattered and distracted*. I can't fully understand words (especially written words). Well...it takes me A LOT more effort to understand. I might have to read a simple FaceBook post 5 times to get what it's saying. I have a VERY hard time thinking and an even harder time expressing thought. It's not really that I don't know how to say what I'm thinking...it's that words just aren't there. Sometimes it's that I have a word that I just can't come up with. (I want to say "I'm going to open the door" but "I'm going to open the fruitcake...the franderbobber...the nutshell..." is what comes to mind (or comes out of my mouth).

There are times when I'm either overly emotional** or have a lack of emotion or inappropriate/incongruent emotions.

Up until recently I had a headache EVERY SINGLE DAY. It wasn't all the time, and it wasn't completely debilitating. It wasn't like that early on. I know that because the first neurologist I went to was a headache only doctor. I remember telling her I wasn't having headaches. I don't exactly know when they started, but at some point I started paying attention and saw that I was having them every day. I realized yesterday I have not had a headache for several days!!! Sometimes you don't notice when something familiar is missing until it's been gone a little while. Now I did wake up with a headache this morning, but it didn't last.

I'm VERY weak and have no endurance. I get tired quickly. However, I was having to nap quite a bit and I don't think I've had a nap all week long!!! I'm certainly not able to run but I have been able to walk/run and I have taught Spin class the last two Mondays.

I have gained about 15 pounds. That could be from the steroids, but I think the biggest reason was how I was eating the whole month of June!! However, that could be a slight side effect from the steroids. I don't fully understand it but one way steroid use impacts the body is that it prevents glucose from entering cells. You end up with higher blood sugar, but the cells aren't getting their preferred energy source. This can lead to an increased craving for sweets/carbs. ((Anyone in the medical field who is reading can feel free to set any errors straight...I don't have a grasp on it and it's not something I've spent ANY time trying to understand!!)) Combine these cravings with added stress of my grandfather's illness and the sudden loss of my grandmother...combined with the stress of illness in general...combined with all the traveling I've done in the last two months...on TOP of NOT working out several hours a week?? It's a wonder I've ONLY gained 15!!

I do think the steroids are working (to lessen inflammation and to suppress the attack of the antibodies), but they aren't working as fast (or as completely) as I had hoped they would. In the past I've said "I can't always control my circumstances but I can control what thoughts I allow in my head." I'm finding that's not always the case. Some days I have an incessant replay of one tiny song snippet (for days at a time, NONSTOP, even in my dreams), some days it's COMPLETELY blank up there and I can't produce thoughts, much less words, without tremendous effort. But, as I've been writing this, I've realized that it IS getting better each week.

I am FIVE weeks into a 48 week treatment plan. To be able to say I'm getting better is REALLY GOOD. To say I'm not 100% stands to reason. I shouldn't be 100%...

I'm not the scarecrow...I'm a butterfly...well, not quite. I'm still in the process....

I think I'm the pupa, but maybe my colors are starting to show a little bit!

Thanks for stopping in and sticking around!!

* to be clear...I'm ALWAYS a bit scattered and distracted, but this has been taken to an entirely new level! **to be clear...I've ALWAYS been "overly emotional" but they usually are just "fully felt" not wildly unrelated to what's going on around me!! :D

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!