12/25/14-Merry Christmas

12/20/14-Adjustments in Paradise

A lot has happened since my last post.  It will take several posts to convey it all.

First off, the picture above represents love and fun.  The faces are blurred because I don’t know anyone.  Not really.  Well, except for the palace purchasers.  They are in this photo, but for the most part, I don’t know anyone else and it seemed inappropriate to put them on the www without their permission so I blurred their faces.  It was very kind of the palace purchasers to invite me to their annual Christmas party.  I was very grateful to be there.  You see, I was out and about earlier in the day and got lost, again.  I barely made it home in time for the party.

And to be honest, had it not been the palace purchasers, my friends, I would have stayed home.  Getting lost and exhausted on what seemed an otherwise non-symptomatic day, really rattled my cage, so to speak.  I went to the party with no make-up, an outfit thrown together at the last minute, and no shame. I had a great time and I felt safe.  Of course the commute was brutal.  I had to walk a whole of probably ten yards. LOL.

I have come to the conclusion that instead of “battling” my symptoms and trying to live a “normal” life (whatever that is), I need to make peace with what is and embrace it.  So, I have begun a journey to be realistic about my capabilities, adjust daily as needed and implement as many tools as I can to make it all easier.

Dipped, Busted, Drenched and Dropped

Over the last couple of weeks I have had many successes but I have also dumped my oatmeal in a pan of sausage links instead of a bowl.  That’s not too abnormal I guess if one is distracted enough.  After all, we all have brain burps, but I continued cooking it because I couldn’t figure out what was wrong with the picture. I don’t cook on days I’m symptomatic, but I wasn’t symptomatic when I started preparing my breakfast.  I got alarmingly lost when I wasn’t symptomatic and I poured oatmeal on sausage.  This sudden onset is new for me.  And a bit scary.  So I adjust.

FYI - sausages, even warmed up, don’t taste so good after being cooked in oatmeal and rinsed.

I’m staying home more and I plan ahead more.  Even so, mayhem in the kitchen continues. I dropped a dozen eggs the other day.  Somehow, they exploded as though tiny grenades were detonated inside each one.  That was fun to clean up.  The next day I dropped a huge bucket of water in the middle of the dining room/kitchen/living room.  Remember, I live in a 26’ bumper pull trailer.

FYI - one bucket of water can drown an entire house.

I was recently given a carton of 28 mini cupcakes.  I managed to drop 21 of them.  Each one found unique places to slather icing as they found their way to the floor, and I don’t think a single one of them landed right side up.  Nonni came running over and before I could stop her she managed to get one lick in.

FYI - this icing should have come with a warning - “Caution, if dogs lick this, they will make a horrible scrunchy face and back their way out of the room as if under attack.”  (At least I didn’t have to worry about her eating it and getting sick.)

The kitchen seems to be an ongoing saga for me.  It appears that when I’m not cooking, or dropping things as the case may be, I forget to eat.  Yes, I literally forget to eat.  I suppose, as in the movie “The Devil Wears Prada” that could be seen as a good thing.  But it’s not.  I read recently that one of the symptoms of advancing Alzheimer’s is the loss of desire for food.  I don’t have Alzheimer’s but a lot of my symptoms are similar.  So, I’ve added meals to my daily checklist.  Another adjustment.

The palace purchasers gave me my Christmas present early.  It allows me to cook safely.  It’s a crockpot that has only timed settings.  How awesome is that?!? I can choose between HI for 4 or 6 hours, and LOW for 8 or 10 hours.  I don’t have to worry about turning it off (or not).  It’s magic!  And there is a chicken cooking in it right now with bbq sauce, onions, celery and spices.  Yum.  I share that because it took me 1.5 hours to accomplish that feat of putting the chicken in the pot.  I know that’s not a normal pace.  I’m adjusting.

Living with HS can be daunting.  It certainly at times is frustrating, but so far I’ve been able to find ways around my symptoms.  As long as I can take care of me and my furbabies, I will remain independent.  Bentley has been ill lately and I need to give him 2 pills a day.  I worried at first.  Phone reminders, sticky notes, etc., just weren’t doing the trick.  Then I came up with the idea of storing his pills in their food bowls.  Now, before I feed them each time, I give him his pill.  Voila!  Problem solved.

And feeding them twice a day is on my checklist so it’s all good.  I recently bought a little piggy chalkboard that fits perfectly behind my stove and I use it to track my tallies for meals, water, feeding the dogs and my vitamins.  It’s an adjustment, and it’s cute!

To be honest, I was beginning to “get my dobber stuck in the dirt” as my great grandmother used to say.  There are times I feel discouraged and fearful, concerned that I will not be able to remain autonomous and build self-reliance.  Then a few things happened.

YOUCARING

My friend Tracy created a fundraising campaign for me (here). The money raised so far has allowed me to keep my car one more month.  Thank you donors!  The financial support is a Godsend in and of itself, but the campaign has also given me much needed moral support.  The outpouring of encouragement has lifted my spirits right when I need it the most.  I am strengthened and blessed.  Namaste.

INSURANCE

I have also been blessed to get insurance effective January 1 through Obamacare.  It doesn't matter what your political views are, and this is NOT a forum for that, but I will be able to see doctors again in 2015. This initiative has given me great peace of mind and quite possibly has saved my life. How do you put a price or premium on that?  I am grateful.

RESOURCES
I am reading a book, “Still Alice,” that will premier as a movie mid-January.  It is a moving story that will walk viewers through a poignant perspective of someone developing Alzheimer’s.  The similarities to my life leave me rattled.  I am learning a lot from this author who did her research well. The story of how this book landed in my lap is synchronous and I will share that event another time. If you want to know what some of my days are like, read the first few chapters of this book.  Hopefully, my symptoms will max out and remain manageable.  Those with Alzheimer's are not so lucky.  It is not a depressing book.  It is awe-inspiring.  I highly recommend it.

At one point in the story, it is noted that advanced Alzheimer’s is a result of neurons bundling on the hippocampus, an entanglement of sorts.  That hit me hard since my traumatic brain injury (TBI) is scarring on the hippocampus (HS).  I almost passed out when I read this part of the book.  I had to force myself to breathe.  I put the book down and began searching the internet.  It led me to this article (here) about Thomas Dixon, a TBI survivor that uses Twitter as assistive technology.  I read his story and immediately created my own private Twitter account.  It gives me great hope for managing my time and memory lapses.  It is a brilliant concept and Mr. Dixon travels, speaks and even recently finished his master’s degree.  I haven’t had time to read or research more (yet), but I will.  I went from barely being able to breathe to tears of immense joy.  Thank you Mr. Dixon!

Then today, all of this gave me the courage to hire a coach.  Thank you Angelique Giron!  She will help me strategically manage my lifestyle.  Right now, that is no less important than actual medical care and I am grateful to everyone’s support that is allowing me this opportunity.

In addition to improving my daily living, working with her will, among other things, help me publish my books. I have no idea where this will all lead but I need help and I have been praying for the right person to guide me through all of these adjustments and help me manage a productive life so that I can accomplish the dreams this beautiful Universe and God have given me.  I am still Debra and I can still write.

In fact, I have a 3rd conference call with Hay House/Balboa Press on the 29th about a book series I am writing, “Ariana, Star Giver.”  In the meantime I have decided to self-publish my collection of short stories through Lulu.  (Shout out to my cousin Bob for helping me with that decision!)  It turns out their technical requirements are beyond my capabilities at this point, but I am confident that just like Angelique, the right person at the right time will show up in this universe to help me get this task accomplished too.  If you know of someone, please send them my way.  I am ready for and expect great things to happen!

It’s funny.  I used to write technical manuals and now I can’t even decipher them, but I can adjust to that as well.  And I do so gladly with a grateful heart.  It’s just another day in Paradise. Life is good, always.

12/7/14-My Festive Weekend

On Friday, I woke up bright eyed and full of energy.  I had forgotten what it feels like to have so many good days in a row!  I could get used to this!

However, as you can tell from the picture, Nonni and Bentley weren't too happy.  Look at their poor little faces as I make them get up so I can make the bed.  Nonni is yawning!  But don’t feel bad for them… they each have two (2!) of their own beds in the living room.  You’d think I was sending them to the salt mines.  LOL.

They got happy though once we settled on the deck and they got to watch the sun come up while mama worked.

I love when I can get up early in the morning while all is quiet…. except for the sounds of nature.  In addition to Nonni snoring, I could hear birds of different feathers, horses, chickens, roosters and cows.  It was a wonderful way to start the day.  It’s not a very good pic but this is a Woodpecker (blue arrow) dive bombing a Cardinal (red arrow) on my feeder.

I worked all day and got a lot done.  It felt great.  I didn’t make it to the Goliad Lighted Christmas Parade that evening, but I made it to the Christmas Market Days on Saturday.  All vendors had to offer handmade goods.  It was quite fun.

Christmas on the Square

Did you see the 1988 movie, Funny Farm, with Chevy Chase and Madolyn Smith Osbourne? Well, an old-fashioned Christmas in Goliad feels a little like that, sans the snow.  I didn’t stay long, so I missed the bands and evidently the longhorns (cattle not football), but the town and the vendors and the people and the carolers…. Well, it was perfect.  And on the way home I stopped at a yard sale and got a hammock w/stand for $5!!! Awe-some!!!

12/4/14-MYL OMG WOW

Mediate Your Life Immersion Program 2015
Cover Photo and Video by J Kendel Johnson

I am grateful to report that I enjoyed another great day of exemplary health and it allowed me to take care of some things – such as the legal papers for my power of attorney and medical directives. Ugh. I also met with staff at a facility to explore options around assistance and possible “day care”.  It was a productive day and I got to be with some wonderful, caring people.  It was also a day that did not meet my need for autonomy, independence or respect.  By the end of the day I was exhausted and headed to what author Brene’ Brown describes as a shame spiral.

Because of this wonderful program, Mediate Your Life, I was able to reach out to an empathy buddy that walked me through a session of feelings and needs.  In less than 30 minutes I went from feeling degradation and shame to feeling heard, understood, loved, cared for, hopeful and even courageous.

Now that I have clarity around my feelings and needs, I can also process and practice communicating those feelings and needs to the people I will continue to interact with in a loving way that honors them and gives them the respect they deserve.  Because of this training, I will be able to communicate authentically from love with honesty.  And I'm a novice!

So, for me, MYL doesn't just navigate and resolve internal and external conflicts.  It is also a spiritual tool that helps each of us remember who we truly are so that we can communicate from our Higher selves and promote peace and love.  It is a way of life I aspire to every day.  Today, thanks to this training and the wonderful people living this program, I reiterate that I went from resentment, anger and fear to peace, love and empathy in less than 30 minutes.  Wow.

My friend J, producer extraordinaire, created a video that is a beautiful expression of MYL.  Click here to watch.  You'l be glad you did.  And they offer a free practice call on the 17th (info here).  MYL can change your life.  I’m just sayin’.  ;))

12/3/14-De Plane, De Plane

I have been in bed since Sunday.  This time the symptoms were far different than they ever have been.  The best way I know how to describe it is that it felt like I was being held by my ankles and hung upside down.  No matter what I tried, I couldn't shake that feeling.  Nor could I stay awake.  For the most part, I was horizontal.  Attempting physical activity and cognitive skills made me feel like I was running in mud.

While lying there, I couldn't help but wonder if this was the end of the road for me.  Questions ran through my mind like a slow dripping faucet, "What if I don't recover from this and what happens if it gets worse?"  What if.  What if.  What if.  I was driving myself crazy.

I used every tool I know to stay positive - prayer and meditation, phone calls, prayer and meditation, more phone calls.  Reading and writing were minimal and only caused me to fall asleep even faster.  I was a mess and depression was on the prowl.  God, friends and family helped keep it at bay.

One friend has offered to set up a fundraising website for me.  I have mixed emotions about it, but I also am out of options.  It gave me hope on some otherwise dark days so we'll see what happens.  I'm dependent on her expertise to pull it off so if we are able to get it up and running, I'll let you know.

HS is so strange.  According to my research, it is common for symptoms to vary so widely:

The seizure always starts in one region [of the brain] but may disperse to others.  That is why the symptoms are different each time, and why the duration and recovery is so varied, but they are not epileptic or convulsive seizures.

I am grateful that around 1:30P today, my symptoms lifted.  All of a sudden the horizon tilted upward to my left and then tilted upward to my right - much like the flight landing gauge pictured above.  I stopped what I was doing and without notice, just like that, the horizon balanced and my symptoms were gone. De plane landed.  I have enjoyed clarity of mind and energy the rest of the day.  It has been glorious!

I'm almost afraid to go to bed because I never know what the next day will bring, but I think I'll borrow what I've learned in Unity:

EXPECT AMAZING THINGS

And so it is.  Goodnight everyone.  Sweet dreams.  Rise and shine tomorrow with the knowledge that this is the day the Lord has made; rejoice and be glad in it.  (Psalm 118:24)