Friday, August 29, 2014

What Do You Say?

When you discover, by accident, that your daughter shared this with a friend:

"My Mom is dying from congestive heart failure and liver disease.  I don't know how I will live without her."

I know the kids know. I know.

But what do you say? How do you assuage their fear?

Sometimes I mitigate my illnesses by reminding myself that the older kids are established. Own homes, are engaged, working their careers. . .

And then I look at Evie Lou and remember.  She hasn't been given the same amount of time with me, and she is truly scared.

I forget that Evie is only [soon to be] 17 years old, because y'all know she is my partner in crime, my foil, my best friend and I can't get outside of these four walls most days.

I have never wanted one of my kids to be a *friend*.  I am the mom. They are the kid.  Friends come later.  When they are growing up it is parent and kid.  There's a difference.

I like that.  It has worked well....but Evie?

Things changed.

I don't want to leave anyone. I think of them, each, individually.  It breaks my heart to know I am letting down all the kids and Steven.

But I especially don't want to leave my ViVaLyn alone without me.

The words she wrote to her friend scared me more than anything I have ever experienced in my entire life.

And? What do I say?

It's 3:49 AM Do You Know Where Your Skippy Is?

In front of her computer, of course.

I know you probably aren't surprised Tadpoles, considering how you know my woes of insomnia.

But?  I have to tell you - since I got back - I have been sleeping an inordinate amount of time.  From 10ish at night until the rooster [across the street] crows. And then, after I got everyone out the door, I would collapse back into bed and sleep until 3 or 4 pm.

It was the best thing in my world.
Sleep. Glorious sleep.
The kind of sleep where you drool and wake up stuck to your pillow because you are so exhausted you didn't move in over 6-8-10 hours.

I haven't had that but once in a hoodle in over a decade.

And yet?  I had it for almost a week.

The thing about sleep, we all know, is that it does rejuvenate a body. Does it not?
However, you can't make up for lost sleep by sleeping extra after a few days of lack of sleep.

For example - say, you pulled 4 twelve hour shifts and only slept 5 hours a night that week.  You would be dragging at the end of that week, but sleeping for 15 hours on Saturday isn't going to make up for the sleep you lost working those shifts.  It doesn't work that way.

Ha.Ha. My body didn't get that memo and decided that "Oh! Lucky charms! She IS going to feel better if we put her in a semi coma for a week."  I can't describe what it is to be without sleep, but you do get used to not sleeping and you get accustomed to the tiredness and fatigue that goes along with bad body parts, especially when one of those is your heart. You compensate, I suppose.  I usually fade around noon, from pain and fatigue and then by the time bedtime rolled around - bedtime for the family - I was too exhausted and in pain to sleep.

Then came the sleep-a-thon week.

Which did cause a few problems.  I started to laugh as I wrote the last sentence imagining y'all saying "Where is the 'BUT' Skippy?"  Yes....I know. And that introduced it, did it not.

After the past few weeks of being immobile and stationary, then finally able to sleep the sleep of a Disney princess, I had so much energy.  SO much energy.

Here is my failure. It is fake energy.  It is pretend. It is any word you want to pull out of your thesaurus that means it can disappear in the snap of your fingers.

The one thing I crave, desire, want so much is to be the old me. Even after years of dealing with this and experiencing getting worse, I still want to be me.  Y'all have heard this refrain too many times. I know.  I can accept a lot of things [don't get me started] but not this.

Fake energy being what it is I was running around, literally, driving Ozcarz, grocery shopping [alone!] at more than one store, laundry, cooking, baking. . .you name it, I did it. Like the old me.

And the family noticed.
And the family was happy.
Happier than I had ever seen them in quite a few years.
"Look! Old Mom is back.  Doesn't your laundry smell so much better when Mom does it? No wrinkles too."
"Oh...fresh bread with dinner, everynight!"  "Pie! How many pies has Mom made?"
"Who mopped the kitchen floor? Mom? Really?"

Then last night it started.  The pain. The ache. The one thing I can't escape, nor fall asleep to, unless I pass out from exhaustion. Every bone, joint, muscle, follicle screamed when I laid down to sleep.

I can wait for the exhaustion part. I have done it before. I get goofy as sh*t, but it does come, eventually and I get a few hours to reboot.

So as to not be boring. . .allow me to continue

The spasms came next and those are their own special treat.  They are a newer occurrence, since last summer, and are a progression of the disease[s] which haunt me.  Imagine a charlie horse, in your calf, then multiply that from your calves to your ankles, feet, toes, hands, fingers, wrists - aw hell, I had my jaw lock up on one side the other day while talking to Steven on the phone.  Name a muscle in your body and if it can clamp up? My body knows how to do it and has.

I had a whole week without this. A whole week!

Everyone takes for granted going to bed and falling asleep, only to be awakened by an alarm clock, a baby crying, a bump in the night or a rooster, right?  Then there are those of us that lay down and hold perfectly still hoping that if we don't move a single muscle those muscles that inhabit our bodies might not notice and won't spaz [or pop, as I say to Steven.]  I know many, many people suffer from insomnia, as I did too - and lack of sleep can be one of the most debilitating things to a person.  Sleep is as valuable as air, water and food to our health - yet, it isn't insomnia that is keeping me out of bed now.

Tonight, and for the past year, with brief respites, it is because the only way to find relief is to sit or stand upright.  But I am too tired to do any of the things I want to do.  Like laundry [yes, I am the only woman in America that actually wants to do laundry, go figure] or bake or cook.

I still do those things, but it swamps me.  I can't NOT do it. It makes Steven and Evie too happy.  They don't realize how their wonderful reactions hit me deeply. I want this everyday. I want to hear how great it is not to have to do their own laundry or mop the wood floors or drive to shop.

But it ruins me.

Shuts me down and keeps me in my chair.

Two, three days?  I am done.  For a week. Or two.  And then it all piles up. [Laundry metaphor Tadpoles. You're welcome. hee ]

My PCP tries every remedy he has in his arsenal, but to no avail. My former RA doctor simply patted me on the head and said "It has reached your back and with your other conditions, what did you expect?"  Hence why the bitch is my former RA doctor. And yes, this woman, who is young enough to be my daughter PATTED me on the head.  I damn near bit her.  It was the one appointment that Steven couldn't attend. It was also my last with her.

I could take oodles of narcotics to give me relief and quit my own bitchen', but there are a few problems.  There are very few drugs I am willing to take for fear of compromising my heart and liver. The doctors toss this sh*t at me and say things like "Well....[long pause]. . . it will relieve your pain. Don't worry about the death it might cause." I kid you not.  Not those exact words, but they figure I am going to die anyway, why not practice medicine on the sick chick. It drives me nuts. I am waiting on a transplant, yet, she is trying to move me up the transplant list faster? If I hit the top 10 I still may not receive one, especially if I damaged myself by agreeing to her voodoo. It doesn't make sense.

Then there are the things they have prescribed I can take safely and tho' they worked, the side effects ranged from sheet thrashing nightmares ["Why suffer from regular insomnia when we can keep you up for days with one little pill!"] and copious vomiting.  I don't say that lightly.  I know the step count between my chair, the kitchen sink and the bathroom.  I know how long it takes me to get to each.

A few months ago I told Steven "I miss our old powder room [sink and toilet]."  He asked me why and I replied "It's the only place that when I was sitting down to go potty I could rest my chin on the edge of the sink to throw up at the same time."  Yes, he did laugh. But it's true. That was one damn small bathroom. giggle

It's now 5 am  and time for me to push Steven out the door to work. Thank goodness it's Friday of a three day weekend.  I have coffee to perk and kisses goodbye to give.

Gang?  Hang in there - it isn't easy, but it is a helluva' lot of fun if you let it be.  I know this post might not illustrate that, but in my heart there is more to be grateful for than to allow your world to be colored dark because of it.

I try to explain myself, but since none of you is sitting directly across from me listening to my deep voice, tinged in southern drawl, it doesn't make a whole lot of sense.

I am just tired and rambly.  Then again, when aren't I? ::grin::

Smile loudly, life is a gift!  We'll see you on the flipside.

Love and hugs, Janine

Wednesday, August 27, 2014

Wouldn't It Be Nice

If I posted something?

Now I do have a pretty valid excuse for disappearing there for a while - two weeks - but no reason to go into all of that. I'm back and I guess that's good enough for me. Hope it's good enough for you too. ::smile::

Right now I have a very heavy heart - and to be honest I don't really feel like talking about it. I spent yesterday crying and I know if I proceed to explain my sadness it's just going to be a big 'ol snotfest again. And the truth is - the reason for my tears has absolutely nothing to do with me.  Just a very much loved and admired friend and Tadpole.  I want to do our friend justice, but today just isn't it. Okay?

How's that for honesty?

However I did receive some outstanding Tadpole news - two things, in fact - but for now I am sworn to secrecy by both of my friends, but I have to say both of your "shares" really made my day - and I was able to smile at your happiness. So, win-win there.  I promise to tell as soon as I am given the green light. And don't try and guess the rest of you froglets - there is absolutely no way I think anyone could. heehee

Now I will share some pics - nothing much but it's an exciting time in the pond as we have two seniors in the family. Emily graduates from JMU in December of this year and Evelyn, our baby, will graduate in June 2015.

And then?  That's it.  Come August 2015 we will have an empty nest. I think Evelyn will be the hardest, because she just seems to BE here all the time with me - and then there will be no more "best part of my day" when she walks in the door, no more lunches, no more late night, early morning card games/baking sessions/trouble making/trips to McDonalds.  Ah well...I can worry about that when the time comes - but I do keep threatening her that I am going to homeschool college. We'll call it "Skippy U" or "University of Mom".  As it stands she is leaning hard towards Clemson U, so all my South Carolina Tadpoles get ready. If she is accepted our baby will sweeping your state in a years time.

Oh - the pics?  These are proofs of Evelyn's candid shots for her yearbook. We have yet to get the final set - these were taken Sunday - but we were pretty excited so far.

Please note the wearing of the Converse tennis shoes in the second pic.  We had to convince her that maaaaybe it wasn't such a good look with the dress in the first.  She is her Momma's girl tho'. ::grin::

Yesterday was "National Dog Day". Which, really? I find ridiculous, because?

And finally today is Weenie Wednesday, as so lovingly pointed out by my great friend Mare on FB today. She also has a blog Mare's Updated Nest [but SOMEONE ::ahem:: hasn't posted in a while*.]  I guess it could mean our wiener dog - but no - it's a hot dog kind of day.  I was a little tired of cooking so tonight it's simple hot dogs, baked beans and macaroni salad.  I always throw in a few easy nights - heck most of what I make isn't hard, but I do tire easily - so it's nice to know after a day full of making spaghetti sauce and loaves of french bread yesterday I get a break tonight. YAY!

Now, I think I am going to institute Weenie Wednesday and buy these shirts for the family. If they don't wear 'em they don't get fed.  heehee

Hope you all have a great week.  Y'all are in my thoughts and always in my prayers.
Love and hugs - and don't forget "Smile loudly - because LIFE IS A GIFT".

See ya' on the flipside.

*I know, like I should talk. :D