Tuesday, August 23, 2016

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

Thursday, July 28, 2016

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.

Friday, June 3, 2016

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