Goodbye Grandma Hilda

It was a sweet funeral.  Not bittersweet, just sweet.  The bitter was the last few months witnessing her making herself ready.   A century is a long time.
There were twelve Catholic priests (one of them her own son) and a bishop celebrating her Mass. That is quite a sight to behold, especially in a smallish church.
Since I sat in the aisle in my wheelchair, I sat closer to her than anyone else.  At one point I reached out and touched the vestment that covered her coffin.  Just saying my final goodbye.  Taking advantage of the fact that God put me so logistically close.  I did have a migraine when Mass began and so for the Gospel part, I put my sleeping mask over my face, letting the darkness help the medicine work, remembering that it was none of my business what anybody else thought.  During the Eucharist, I watched through 2 pairs of sunglasses.  It is the first Eucharist I have witnessed and received for at least 4 years, maybe more.  Very special to me.  Usually, I give in to the utter discomfort of it but, of course, I would not allow that to be an option during this service.  I didn't cry much, some nose running.  But, singing is such a personal, special thing to me that I could not join in song because that's when tears would really come.  I had to be quiet.

The Rosary for her the previous evening was quite special too.  I'm sure I have been to others for loved ones but, I don't recall them.  My parents, my cousins, my aunts and uncles were active participants in both these services, and I wished I could be.  But, I was there.  And that was enough.  In fact, that was a lot.  I think most everyone now knows my Tim to be the superhero he is for his part in driving me 8 hours to her home in rural Nebraska.  I'm glad for that.  I want him to be appreciated by my loved ones.  He does more for me than I can possibly describe in the mere English language.  He lets me have my own life,  and yet, he never inflicts guilt or disappointment when my condition disallows something he hoped for in his own life.

My uncle, Fr. Mel, celebrated a family Mass in one of the hotel rooms and I read the second reading.  My folks told me how great I did.  I thought, all I did was read aloud a piece of Scripture.  Maybe they have never heard me do that before.  I can read with quite a lot of inflection, which makes listening more interesting.  And I got to thank the Lord for her foundation of faith, which allows the layers of faith to grow so strong, that now, I can bear this cross.  Some who are affected as I am cannot bear the burden.  Suicides happen.  But, I was given a gift she shared with her children, which was then shared with me.  Faith.

I am so full of gratitude that I got to see my beloved, treasured aunts and uncles, cousins, parents, brother, and meet some of the many many folks my Grandma's life affected.  It was a very sweet time.  The weather was lovely and my symptoms were not severe.  I took naps and medicine while others visited.  It allowed me to be part of things in the way that I could.

It will be some days before either Tim or I feel recovered from such a long drive.  We are not accustomed to that.  It is priceless to be home.

Short-lived good times

Well, for two whole days I felt what resembled decent, maybe even actually good, for me.  Now, back to reality.  I took the dog for two morning walks which I haven't done since the spring.  During yesterday's walk, My legs got tired and painful and the back leg kept slamming into the front one, buckling the front knee and sending me almost down about five times.  Thanks to my cane, I didn't fall but, that is the only reason.  Good ole' Pokey.    He's there when you need him.

I did some cooking yesterday and was happy with the results.  Both recipes were new.  But, toward the end of the morning, started feeling very ill.  Like, I've got the flu, ill.  So I ate some of my new food for lunch, took Valium and went to bed.  After 2 hours, I got up feeling refreshed for about 30 seconds, and then ill all over again.  Nauseated, dizzy, full hard body ache, headache, super fatigue, all of those things that make you think you've gotta be sick.  But, I'm not sick.  It's just my life.  So, I spent the rest of the day on my couch, not even able to crochet.  Just lying so heavily on my side that it felt like I was suddenly about 100 pounds heavier.  I did take my temperature to be sure, but I knew I didn't have any fever.  I was right.  I don't know why these sudden "events" of symptoms still surprise me, but they do.  I did think I was getting sick for a few hours until Tim came home and reminded me that everything I named were stuff I sometimes get during a flare.

The worst part is that I am not asleep.  It is 2:52 am.  I woke at about 1 and took the strongest pain med I have at my disposal, Hydrocodone.  It doesn't knock me out but, does help with extreme pain enough for me to sleep.  Not tonight.  Still awake.  So I've been listening to one of my murder mysteries.  Finally, frustrated so, decided to get up and do something about it.  This is the thing I'm doing.  Writing to y'all.

I'm grateful I don't have insomnia more often.  It is a killer for me.  I know tomorrow will be much worse than today was because of it.  That is not me "trying to predict the future".  That is me knowing from my own historical data that sleepless nights trigger very severe reactions.

Gonna open my huge outline and work on my book for a bit.  I'm so frustrated.  Two good days is way better than none but, come on, two??  Really??

Just a simple walk

I am home from walking the dog.  A good medium sized walk.  It's 6:42 am and normally, and frankly ideally, I'm sleeping at this time.  But before I complain about having risen too early, let me just say how delighted I am to have been able to walk with him.  I have taken small walks with him but, this was 45 minutes.  I can't remember when I was last able to do that.  Maybe April?  Many, many months.  So grateful that the summer is behind us for the year.  Pain is worse in cold weather, but somehow, and I know this hardly makes sense, I can function better than I can when its hot.  The heat deflates me.  It unbuttons me and I feel as if I am falling apart.  But, the cool and cold weather, I feel buttoned up and more capable.  Yes, it is more painful but, I can do some things.  I am not trapped in my air-conditioned walls.  I have such a lovely home.  I never want it to feel like a prison.  It isn't one, I just impose that feeling on it sometimes.  I crave outdoors.  Another loss.  Another thing I miss.  Just being able to go find a tree to sit under and read at any time.  In any temperature.

O is happy for the walk too.  It is hard to be unhappy when there's a happy dog shadowing me.

Have happy days,
Marie

Wow, a lot has happened to me

So, I have jumped in the deep end of this "writing a book" pool.  I did at least begin with an outline, nod to Mrs. Huenke at CCC, but, it is eleven pages long.  Wondering if I might have challenges with this when I get to the editing part.  LOL.

I have decided my strategy is to write the book as if I am writing it to my friend, and old friend, newly diagnosed.  That stage of it for me was the one in which I would have welcomed a book like this.  So, without naming any names, (I don't even know if she reads my blog) I'm gonna write this to you, yes you.  Some of it may sound harsh, rude, blunt, but, I promise all of it will be the truth.  The truth from my eyes and ears.  My truth.

It is energizing to have this project committed to and I woke up this morning and couldn't wait to get to my brainstorming outline.  I want to make sure I have really rolled around in it for a bit before I start making sentences.  I fear when I start, I might not stand up again or eat anything for 5 or 6 days.  Well maybe one day.  And even if I did that for one day, that is a no-no for me.  Moderation.  Balance.  That is the land I live in.  Mantra.  Come on y'all.  "Moderation, Balance, Moderation, Balance......"  It's like the scene in the movie Hitch where Will Smith is teaching Kevin____ how to dance.  He says "you live right here.  I don't ever want to see you doing that crazy stuff again."

Have a happy evening!
Marie

Today is the beginning

Today, I got a new super-angel.  Today, the power of the heavenly hosts rooting for me down on this planet increased by one.  By many more than one, I'm sure.  But my one, my treasured one, counts for way more than a single angel.  Upon hearing she went to the Lord in her sleep I could not stop the smiling and the tears of joy that she has gone home.  I feel nothing but blessed to have had her in my life.

I saw a video that a lil' 6- yr old made on FB about the meaning of life.  After watching the 4 minutes of her simplicity, I decided.  It actually felt like the decision was visceral, that it got made for me, without me, even.  I have thought about writing a book about myself and my experiences.  I have been encouraged to do so by loved ones and by strangers.  But, I have not really thought that I could.  Never really thought I was "great" in that way.  Now, I believe I am.  The belief in it is tangible, like I could put it in my pocket and carry it around with me.

I made the public commitment on FB just now as accountability and I want to do so here, as well.  There will be an autobiography on Marie.  I do not have any time related goal.  As I sat down with the laptop in the living room so Oscar can lie on my feet, I turned on TV because I like background noise sometimes.  Love, Actually is on.  That seals the deal.  This is God and His whole universe telling me that I have moved toward my calling.  It is the thing that I have been afraid would be laughed at.  I have even laughed at myself for just thinking the notion that anybody would want to read about me.  Well, no more laughing.  I will become great.  Within my limitations and amid whatever pain comes my way, I will do this and it will not be laughed at by anyone who loves me.  And really, who else in the world matters?  Not a single solitary one of 'em.

Have happy, happy days,

Marie

Awesome doesn't begin to describe

First, good news.  I figured out why I was waking up screaming.  The dose of melatonin was too much for me.  I stopped taking it and haven't had an incident since.  Just a side effect.  No need to see Dr. L.

We have been home from our vacation for about two days.  I am in severe pain.  Symptoms of every kind are extreme right now.  Large combo package of reasons, not the least of which is just exhaustion and jet lag.  Last night I slept from midnight to noon.  Tonight, took an evil melatonin just now at 7:30 to try to help me reestablish a normal sleep time.

I can't wait to share the stories of my ginormous adventure.  I honestly did not think I'd be able to ever enjoy my life in the way I did last week since I first got sick.  I thought that kind of delight was just out of reach for me.  I was wrong.  Blessedly, blessedly wrong.

I took many pics and movies.  I rediscovered my sweetheart's fierce love for me and defense of me to any predator.  I beheld some of the Lord's creation which left me speechless and teary eyed.

I did write "journal entries" two days  and will share those as is.  But, the rest will have to wait until I can start to spare spoons for the telling.  My speech is just sort of gone right now.  I want so badly to call my folks and share with them the stories of my fabulous time but, my body won't cooperate at this point.

I have a happy life.  I am a blessed woman.  I hope some spark of light the Lord gave me shines on others I meet.  Tim suggested, and discussed at length, the fact that he thinks that I really should write a book, and not just this blog,  about my experience with life and this condition.  Share all I have learned.  Others have suggested it before but, he now would really like to see me do it.  It seems like a daunting task but, so does that pile of dirty dishes when I hurt this bad.  :/

Have some household help coming tomorrow.

Happy, happy days!
Marie

A bit of pre-vacation anxiety

This is due to a repeated nightmare.  I have had it 3 more times since I wrote Love and Twitches on 8/20/14.  I keep waking up screaming.  REALLY screaming, loud enough to bring Tim to me from across the house.  Here is what is happening:  I am dreaming something innocuous.  I never remember what but, it is never a dream where there is any danger.  Then suddenly, I am seeing black and receive two blunt hard hits to my head.  It is painful, but more the jolt and the surprise take me back.  And, I'm highly aware that it is not related to the previous dream so, the only other option is that it is really happening to my head and I wake up screaming.

On our upcoming vacation, we will be in a mini-suite of our own but, ships probably don't have super thick walls, so I imagine if this happens, I will definitely wake others.  I guess it can't be helped.

The really sad part is that I used to look so forward to my sleep.  Now, I am growing anxious about it.  It is a horrifying way to wake up.  I much prefer the dreams where I am killed in my sleep by my family member.  This sudden, out of nowhere attack to my head when I am at my most vulnerable, it is terrifying.  It has not happened during nap time, thankfully, only between 2 and 5 am.

I need to see Dr. L about it.  I'm booking an appt for when we come home.

Have happy happy days!