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.