The State of Me Address--Part Two--Some of the Losses

In Part One, I lamented over the weight I've gained. I'm beginning to come to terms with it. Not because I've accepted it, but because I think I've about leveled out. (And NOT because I've been able to stick to Whole30... 'nuff said about that...) Not only has the gain leveled out, I have seen some hope with my own eyes. I saw a friend recently who has been on oral steroids for about a year (a different autoimmune thing). He initially gained some weight but as he has tapered down in steroid dosage, he has lost most (all?) of what he put on. THAT was incredibly encouraging to me. It's one thing to read about people who dropped the extra pounds after treatment is done, quite another to behold it in person.

I've lost some things along the way in addition to the weight I've gained.

I've lost pretty much all of my fitness. I can not seem to run AT ALL. I can't lift anything heavy. I have a VERY hard time even opening water bottles! I was able to resume teaching Spin class back in August and I haven't passed out (yet), so it's not like I'm bed-ridden. I don't actually know if the "inability" to run is the loss of fitness or the extra pounds or a product of the treatments. (Probably a combination.)

I've also lost A LOT of hair! (Yes, that's really a very gross picture of hair I lost one day in the shower. That was AFTER I had brushed and brushed it to try to get most of it out so as to not clog the drain!) Thyroid issues will cause hair to fall out, but from what I've read, steroids can cause that side effect as well. Lovely. My hair has always been super thin and fine so I didn't really have much to lose in the first place. For most of the last 10 years I've let my hair grow long. My husband ADORES my long hair (I wonder if he's blind sometimes) and he lavishly pours on the praise daily so the "work" involved in having longer hair has been worth it to me (well...to him). Although it seems that I've stopped actually losing hair, what I have is in HORRIBLE shape-dry, damaged, easily tangled and generally unhealthy. So, for the last three months I've been talking about cutting it all off. He cried the first time I mentioned it but the more I whined about the state of my locks the more "comfortable" he became with the idea. Yesterday I pulled the trigger and chopped it all off! It's not exactly what I want, but it's a good start for now. He RAVED about it when he saw it. ...a little too much actually... He might really hate it, but he knows it would add salt to the wound if he made any negative comments so he smiled brightness right into me. I choose to believe he at least doesn't hate it. :D

I also feel like I've lost a lot of time. This has been going on for a year. It feels a lot like my shoulder issue did. Well...except for the fact that I trained for and completed a very tough Iron Man while dealing with that shoulder. I've been putting off making a decision about if I will have a kids triathlon training team/program in 2017 until I know if this treatment protocol is going to work. I haven't been able to train or race. I haven't been able to do some of the things I really love (riding my bike, trail running). I'm doing MUCH better, but for a long time I wasn't even able to engage in meaningful discussion! THAT is one of the worst things I lost along the way that has (thankfully, for the most part) returned.

These are mostly inconsequential things that I lost... When this all hit I lost the ability to THINK and to SPEAK. Now, it's not like I couldn't think or speak AT ALL. I had many acquaintances tell me they really didn't see a very big difference. My close friends and family saw it. More that that, I felt it. You know that feeling you get when you walk into a room and you can't remember why you are there? Or you go to the store and you can't remember what you were supposed to buy? That feeling is (usually) fairly fleeting for most people. Imagine feeling that way about 90% of the day. You know the mental acrobatics you go through in order to find your misplaced keys? Imagine going through them to figure out how to put your hands on the computer keyboard, or to figure out how to hold your hair dryer. I "could" do those things, but they didn't come naturally.  One really good example I have used is that of learning to type or to speak a foreign language. When you are first learning, those things are very unnatural and take a lot of mental energy. When you have learned and they are second nature, you don't have to concentrate to remember how to say "bathroom" or to remember where the "T" is on the keyboard. Imagine going through your day trying to remember mundane things as if they were fairly new. Thankfully the progression of my disease wasn't NEARLY as advanced as it gets for some people. I was extremely fortunate to have found a doctor who knew what it was and knew how to get me started in the right direction with treatment.

I'm not trying to be overly dramatic. It wasn't NEARLY as bad as it "could have" been. But for me to recognize, and grieve, the losses associated with this disease is an important part of moving forward. I'm not lamenting (much). I'm not wallowing (for long). I'm not angry about it (anymore). I'm just acknowledging, documenting, FEELING the appropriate emotions, and (soon), I'll be moving on.

One issue I've battled with in my life (believe it or not), is embracing and feeling what I consider to be negative emotions. I can get/have gotten angry fairly easily. But anger is a POWERFUL emotion. Grief feels very vulnerable. Sadness over loss feels ungrateful in some ways to me. I have lived a good bit of my life trying to stay focused on the flip side...what I have to be thankful for. But I believe you can't suppress one emotion without all of them taking a hit. I believe to do so just fuels one thing-anger. Anger is the defender emotion. The protector. When I'm not able to express ALL emotion I get either very angry or very "dead" (apathetic). Hurting feelings hurt. They aren't pleasant...to feel or to witness. When someone is hurting a lot of people want to soothe and comfort. That's all well and good, but the best thing you can do for a hurting person is not to take the pain away, but to enter into it with with them. By reading this you have done that very thing and for that I truly thank you.

Thank you for stopping by and sticking around...We won't be here long.

Part 1a...Beyond Flesh

I have an adoptive brother. My parents didn't adopt him, I did. It's a long story how it came about but suffice it to say he's the best brother by another mother I could have ever dreamed up. He's a deep thinker like myself. Much like a personal trainer will push your physical limits sometimes, he challenges my thought process, sometimes in very uncomfortable ways.

After my last post he asked me two questions:

1) Who are you? (I ask this question ALL THE TIME in my Spin classes...thanks for throwing that back in my face buddy! :D)
2) Why does your current amount of flesh bother you.

If you choose to keep reading, here's the only warning I'm going to give...this is about to get very deep, very fast. I'm also going to talk about some Bible verses, but you don't have to be a Christian to appreciate Biblical truth. So buckle up and hang on...

I'm going to back up a bit to something that happened a while back first.

A couple of my friends shared a blog post on Facebook several months ago that was written by a "larger" woman. I don't know anything about her, but this post was talking about how some reasons people gain weight are "socially acceptable" but generally people are judgmental regarding weight gain. She mentioned having dinner with a friend who tried to gently inquire about the blogger's recent "substantial" increase in size. She also mentioned in a round-about way that she was eating her feelings instead of feeling them because they were painful. She ended by essentially saying her weight and her state of health were no one's business but her own. She sounded very angry and defensive when she proclaimed love for her large body. My friends, and their friends, were all praising this woman's courage.

...uh...I'm sorry...that's not what courage looks like to ME. Courage, to me, is the ability to be transparent and honest. Courage, to me, is the vulnerability to experience all feelings, even (especially) the painful ones. Courage, to me, is the ability to do the hard things in life when you don't feel like it. Courage, to me, is the willingness to live in COMMUNITY with other people, even (especially) those who don't think/believe what you do. Courage, to me, is to speak (your) truth in the face of opposition. Courage, to me, is to really dig to FIND truth, not just expressing what feels good or what's easy or what you think other people want to hear from you.

In all fairness, my friends, and their friends, probably read all of that in this woman's blog. They read it through the filters of their own eyes. I read it through the filter of my own experiences and my own place in life and my own beliefs of what is "best", of what it means to "love oneself".

Additionally, another cord was POUNDED on with me in this post. She had dinner with a FRIEND who expressed CONCERN for her. It felt very much like she (and my friends and their friends) were saying "my life is NO ONE'S business by my own". That is a very surface life in my opinion. That's FINE if that's the experience you want in life. Keep yourself sheltered from potential pain. But guess what, in doing so you also keep yourself sheltered from deep love. You can't push people away and expect them to be there when you need comfort.

The two points I desperately tried to make were:

1) When we love someone, we ask them hard questions and we come alongside them in life, we are CONCERNED about them. Sure, we have to be invited in, but...let me be clear, if you invite me to have dinner with you (or accept my invitation to break bread) I am NOT the kind of person who will leave things at a surface level for long. But if you know me, you knew that already! :D

2) She sounded VERY defensive so I didn't buy this "I love myself" line she was tossing out. She said she was anxious and she was eating painful feelings. She was defensive with this friend. She sounded VERY angry. My friends (and their friends) were saying that she was angry because society places norms on people and people are judgmental and hateful. My argument is that the only time judgment will hurt you is if you are already buying into it within yourself. Something can only hurt if it hits a nerve. That nerve is in YOU. Sure the outside world might have "created" that nerve but you watered it, fed it, and have protected it with barriers. How about you do the work of making that nerve not hurt by HEALING it??

This brings me back to my brother's questions.

I conveniently skipped the first one. I said I wanted to think on it. But I answered the second one like this (edited to correct Siri dictation misinterpretations)

I do not like the way that flesh jiggles! It jiggles when I walk when I move when I do anything! The only time I have ever had really jiggly fat was after my children were born. Although that brings up really good memories, I do not have an infant to show for all the jiggly fat! I also do not like the way my clothes fit. I have never liked my pear/gourd shaped body. But with this new addition of a Buddha belly, I am very unhappy! I also do not like the feeling of being completely out of control with food. Yes, I hear how that sounds, and I have decided to be OK with that! If you can imagine an alcoholic who is drinking… you would not have to ask why that is a problem. Everyone has to eat. But we do not have to eat the whole container of Oreos at one time. We do not have to eat highly palatable processed junk food at all. I feel like at this point I need to be giving my body what is the healthiest for it. You would never consider feeding a dog you love chocolate for every meal. Because chocolate is very unhealthy, even fatal, for dogs. You would not feed your self dog food! This gets a little bit trickier when we're talking about Oreos! But, it's really very close to the same thing…sort of! It's not really the fat I dislike the most. It is what that represents. I have been completely out of control and unhealthy. Out of control and unhealthy has created the fat. If I could take a magic pill, or get liposuction, in order to get rid of the fat, that would not solve the real issues. 

So he came back and said (in part)

There is a danger of letting circumstances determine who you are*. That is not a good thing....Now, take the next step, should you be worried about these things? Based on WHO YOU ARE, are there more valuable ways to spend your time?  maybe yes, maybe no, I don't know.  But, make sure you know.  

(*This has been a big thing I've talked about in Spin class as well... Maybe this is my clue to just stop talking in Spin!! :D  ...as if THAT ever could happen.)

Last warning...if you thought that was the "deep" part, you were wrong, that was just scratching the surface. (If you want to, you can skip to the last part of the last paragraph...I bolded it.)

Here we go...

My answer (edited...this isn't an exactly what I said in the email...)

So....really it's less about body image than it is about being out of control. Control isn't important to me, it's the MAIN THING!! But, "self control" is a fruit of the Spirit. Looking in the Amplified version, it's only actually mentioned 25 times as "self control" so maybe it's not as big of a deal as I make it out to be...and I am POSITIVE it's not supposed to be something I try to muster up on my own. But there is a measure of responsibility on my part. 

Out of control with food represents 2 things TO ME gluttony (over indulgence of food) and idolizing (the immediate taste of) food over (the health and vitality of) my body. The fat in my mind is the product of being out of control. The problem is that now I'm not completely sure about that idea because, from what I understand the fat is going to be there no matter what because of the steroids. That takes the external measure off the table (possibly). OR it means I have to be all the more vigilant to maintain self control because the big "reward" (the body image I associate with being in hyper control) is not going to come. 

THIS is the dilemma. I feel there's a disconnect between control and reward. BUT...(and THANK YOU SO MUCH for FORCING me to think about this)...the reward IS the self control....and self control brings perseverance (2Peter 1). But before self control there is diligence, moral excellence and knowledge.  I've been focused on the wrong reward. 

What's funny is I talk about that all the time (mainly in Spin) and I've missed it. THAT is the THING!! I believe God will bring me back again and again to a lesson He is trying to get through my thick skull. When I find myself struggling with the same thing over and over again I try to figure out what is the reason...what is He trying to teach me. I haven't ever figured it out with this "food" (any "addiction") thing. 

"Daisy" and I have had MANY discussions on what she has learned from her year with Lyme disease and every time I think "but I have no idea why God is taking me through this brain disease thing"...and I stop pushing because 1) I know He will get through to me at some point and I don't have to manufacture it on my own (because I'm usually wrong) and 2) I start to think that sometimes things just happen because we live in a fallen world with disease.  But I have trouble with number two because God is NOT random AT ALL. I think it's like higher level math (that I don't even begin to TRY to understand). Dwayne says it "looks" random but there's no way it is because math is logical and makes sense, we just don't have the capacity to understand all of it (yet). 

Funny because I was thinking about this for a long time after you asked..."who am I". My first thought was "an athlete...well, a wife...well, a mother, well, a follower of Christ...yes, that is ultimately who I am because that's my foundation"....but I wouldn't have ever connected those answers in this way if you hadn't said what you did and made me "reverse engineer it" in this way. THIS is an ah-ha moment!!! 

I wrote most of the following before I wrote the above... but I moved it to the bottom because it felt like a break from what I was saying... now I understand this better. The reward I have been connecting to with controlling food has been body image, then it was fueling, then it was body health....but ultimately it comes all the way back to diligence, moral excellence and knowledge.... 

I've been doing a lot of "research" on dopamine and how it can push you to do things the brain sees as rewarding. The brain really only responds to IMMEDIATE rewarding. Food, the rush of gambling, shopping, gaming. One thing that can be done is to REALLY focus on what the long term reward will feel like. That's one reason I like it when I tell people in Spin to think about the goal and to put yourself THERE in that moment, focusing on every aspect of the goal...the mind doesn't know the difference between reality and fantasy. ((I think this is why Jesus says if you sin in your heart, you have sinned even if you haven't committed the act...and why He was so concerned with our heart over actions.)) So in the moment of WANT, putting yourself as fully in the moment of the long term goal as you possibly can will help the moment of temptation pass. However, one thing dopamine does is spur us to action. This is why I like to connect the goal to what we are doing in the moment ("rewind the tape in your mind's eye and connect it to the work you are doing RIGHT NOW...").  

Interesting thing....when you look at the fruits of the Spirit they are written in this order: "But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control... (Gal 5:22-23a). I heard a sermon a long time ago, as a new Christian, that they are in reverse order...that self control is the foundation, when you have that it produces gentleness, which produces faithfulness....and so on. That has always bothered me because I think God knows the order He wanted His words to be in. Again, I don't think the Bible (God) is random and disordered. But then when you go to the verse in Peter He puts it in this order: "Now for this very reason also, applying all diligence, in your faith moral knowledge and in your knowledge, self-control, and in your self-control, perseverance, and in your perseverance, godliness, brotherly kindness, and in your brotherly kindness, love." Interesting. 

I'm still chewing on it (pun intended) but one thought I have is that the fruit produces the tree which grows the fruit. So the fruit of the Spirt is LOVE (and so forth), and when that seed is planted inside of us (through the Spirit), and we tend to that seed with diligence and supply moral excellence, knowledge...so on...we get to LOVE. I don't know if that's right or not but I do find it interesting the idea of "loving the skin I'm in" has been a BIG thing for me lately. If my "reward" ends with my skin (well, just a bit deeper if it ends with the flesh) then I haven't gone deep enough with that love. Not going deep enough with that love means I keep focused on the flesh. God has forced my hand a bit with the idea of can I love this vessel He has given me even IF it's fat and there's nothing I can do about it??

The thing is I KNOW this already...know it in my mind anyway. I have said OVER AND OVER that it's not about the body...it's about the "self", the "soul". That was the whole theme of a Spin class one time--"loving the skin you're in doesn't mean loving your skin or what you look like...it's about loving WHO you are". ((Don't you want to come to my Spin class (5:30am Monday and Friday at the Southeast Y.)) The problem I have is the "there's nothing I can do about it" part. I think I still have to do MY part of caring for my body in the best way I know how even if I don't get the "reward" I think it will lead to (ie body image, better fueled exercise or better health). Maybe the reward is one of diligence...which will lead to LOVE in the end??

From: http://artilin.deviantart.com/art/deep-thoughts-321908490; Isn't it BEAUTIFUL? I wish I could figure out how to purchase this. Not sure where I'd put it, but it's lovely.

Okay...deep thoughts are over, you can come up for air now!

If you stuck with me, or even if you didn't and you just skipped to the end...thanks for stopping by and for sticking around.
:D

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

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

Paying the Tariff for Cotton Row

What happens when you have a bill you don't have the funds to pay for? Well, I guess there are choices. You don't pay the bill until you have the funds, or you borrow the money (loan of some kind or you pay on credit).

There is scene in the movie Ya Ya Sisterhood where Willetta tells Vivi something to the effect that at some point "everybody's bill comes due".

When you don't have the currency to pay a bill, and you borrow to pay for it, you not only have to pay the original amount, but there is always some kind of interest attached.

Running Cotton Row Monday was super fun. I loved it. I had a great time (experience, not finish time). AND...I didn't have the "funds" to "pay" for it. I cashed a check at a race and ended up with an overdrafted account.

Usually that analogy would have to do with training. When you don't train for something you either end up with a poor result, a long recovery time afterward or an injury. I wasn't trained but my body was able to withstand the distance enough that I wasn't injured. But I have taken a pretty big hit neurologically.

Here's the thing. I preach all the time about how ALL STRESS GOES IN THE SAME BUCKET. But I'm a hypocrite. I try to segment my life into neat piles and stacks. I had convinced myself that I could handle a 10K because I could handle it physically. I mean I considered it might not be the best thing given my condition...but only long enough to stick my head back in the sand and ignore (what is probably) the truth. That (possible) truth is that I should not have put that stress on my brain.

The big problem here is that I don't want any of this to be true. I don't want to see it. I don't want to acknowledge it. There are so many good analogies I can use here, but I'll stick with the finance one.

When a person has a bill they don't have the money for and the borrow to pay it, they go into debt. If they just ignore that debt, the debt grows. It doesn't go away just because they want it to. Sure, that person can file bankruptcy, but there are consequences that will follow that person for years after that decision to abandon the debt. And, there are even more far reaching consequences because that debt didn't get paid so someone didn't collect. Your debt doesn't just impact you.

The decision for me to run Cotton Row wasn't a BAD one because I've learned another lesson. (I don't completely know what that lesson is just yet because it's like a puzzle that I'm putting together and I don't have all the pieces in place yet.) Or, to keep the same analogy going I don't have all my debits and credits outlined in a good solid budget just yet.

Going on a trip isn't a bad idea. But when you go on a trip that you haven't saved for, and you haven't figured out how you will pay for it, you might have a GREAT time when you are gone, but you have to come home sometime.


I wish I had a more well thought out post to give you here, but my account is overdrawn and my brain simply isn't working like it should....please stick around until I've had time to make some deposits into my account. :D

Cotton Row Number 7-Cashing the Check

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

Pre Race (written Sunday afternoon)

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

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

I did STRONGLY consider surprising Dwayne and being HIS biggest fan tomorrow. I would tell him

Doesn't everyone love more cowbell?!

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

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

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

-------

Ironic.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Looking Back to See What I've Learned

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

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

Take a stroll down memory lane with me.

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

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

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

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

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

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

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

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

Best. Race. Ever.

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

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

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

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

Stay tuned...
:D

Scared

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

There, I said it out loud.

I'm only saying it because I think there's power in admitting fear. There's a measure of control in the admission. Ironic, huh? :D

Phone number removed because this is a public blog!

I bought a medical alert ID bracelet.

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

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

Seizures and hallucinations.

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

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

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

Yup. I'm scared.

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

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

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

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

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

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

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

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

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

Thanks for stopping by and sticking around.

Fairy Tale Life

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

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

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

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

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

Holding Pattern

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

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

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

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

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

What I do know:

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

I can't get hung up in the thought that I am waiting "UNTIL" I go to Mayo. I have to keep moving forward.

Thanks for stopping by and sticking around!

: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!

Grieving Loss

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

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

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

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

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

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

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

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

A very ironic one at that.

Thanks for stopping by and for sticking around.
:D

Random Thoughts

Love this picture! Photo taken from here.

Dwayne noticed I'm writing a lot more lately.

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

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

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

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

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

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

But in the darkness, the light is brighter too.

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

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

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

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

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

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


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

Thanks for stopping in and for sticking around.
:D