Playing Piano

So, I finally decided to learn to play the piano at the age of 43.  I took a series of classes at our local piano store to learn.  I’m doing fairly well, I think.  I’m having difficulty with the left hand; but I’m getting it.

I’ve gotten a few books on reading music and I’m learning to do that to make myself more proficient.  I’ve got two “teach yourself piano” books as well to  practice with.  It’s been a lot of fun learning what I’ve always wanted to know.

For me, music means the world and the world means music.  When I get to heaven, I think I’ll be in the heavenly choir or at least get to mop up after them, just to be near the music.

Music is such a vital part of my life.  It has brought me through some of my darkest hours.  It has lifted me up, it has allowed me to grieve, it has encompassed my soul.  It is the air that I breath.  I constantly have a song in my head.  I sing sporatically through out the day.  I never am far from my musical love.

I sometimes wish I could see music in the same way that the boy in the movie “August Rush” did.  Even though I do not, I do feel the pulse in my body.  Whether I’m singing a silly song, dancing in the grocery store aisle or marching to the beat of my own drummer, I love my music.

My son is also into music.  He plays the drums and tuba.  He’s been in lessons for over a year with his drums and he’s doing pretty good.  He took band in Middle School this year and learned tuba and really likes it.  I’m so proud of him for pursuing his desire to learn an instrument and now he does two.  He also has been tooling around with my keyboard and music as well.  He’s a natural when it comes to reading the music and does better than I do at the keys.  (DANG IT)

I think the variety of music available is so wonderful and I just love how it makes me feel.


Books I Love

As a Christian, I love to read books about faith.  I got totally hooked on “The Reluctant Demon Diaries” Series by Linda Rios Brook.  From the moment I opened “Lucifer’s Flood” to the last page of “The Redeemer”, I was enthralled.  The hardest part for me was waiting for the last book to come out.

After reading this four book series, I was in heaven.  What a beautiful story of sin and redemption.  As I don’t want to give away too much of the story, I will tell you that it is about a lessor demon who gets cast out of heaven with Lucifer and struggles through humanity’s trials trying to redeem himself.  What a beautiful story of being saved.

What I love most about this story is that it gives hope to all those who are in need of saving.

Another author I’ve found that has given me a different perspective on healing the soul is James Rubart.  I discovered his book, “The Chair” while at the bookstore and loved its message.  The book is about a mysterious chair that “heals” people and is said to be hand crafted by the Master Carpenter.  All I can say is WOW!

This lead me to read his other two books, “Rooms” and “Book of Days”, which were equally enthralling.  Each of these books has a different perspective on getting good with God.  I love it that they are about hope and choices and how our free will choices effect our lives.

I’m currently reading Max Lucado’s “Come Thirsty”.  I’m doing it as part of my Women’s Study Group and we’ve been really enjoying the tail.  It starts with the woman at the well, one of my favorite scriptures in the Bible and goes on to much more.

For a personal study, I’m following “Managing Your Moods” Study Guide for women, which is also a good study.  It delves into such emotions as Jealousy and Anger and what the Bible says about these emotions.

I like to read and I even have a few I’ve been reading on my Kindle which are great, too.  “What to Pray” and “The Michael Letters” are part of my collection.

Even my 12 year old son loves to read! 🙂 All I can say is read, read, read!  You never know what you’ll get from it and you could get more than you ever dreamed!

Stupid Pot hole!

I can’t believe it!  This morning I went out for milk in a rainstorm and a brand new pot hole in the street tore up my tire!  I was so mad!  I couldn’t believe it.  I had just drove down that street the night before and no pot hole.  Today?  HUGE POT HOLE!  WOW!  So, I have to get a new tire.  It was so crazy.

Then, a few hours later, the hole is filled.  I have to hand it to the road crew, that hole was HUGE and the city fixed it fast!  BRAVO!

So, now I have to spend $150 to replace the tire.  OH and get an alignment.  I’m not a happy camper.

On a brighter note, I made a delicious homemade chicken soup with fresh dumplings.  It was so delicious and the boys loved it. 🙂  I also *think* I’ve got the right recipe for a favorite of mine from a great hot dog stand up north for their bread.  YUMMY!  How cool is that?

I also made the boys a banana cake with peanut butter chips in it that they devoured.  I love it when they eat up my cooking.  My son and his best friend are so great to cook for.

Thanks to TS Debby, the weather has been wet for the last four days and the next five don’t look any better.  UGH!  My dogs and I went for a walk this morning and they were smart enough to venture no further than the eaves of the house to stay dry and get relief.  It was a quick one!

I feel so blessed.  I FINALLY finished an “Angel” wing album I started before I was assaulted in June 2009 last night.  I just couldn’t get myself together enough to complete it until now (3 years later).  It looks great.  I feel it is so much better than it could’ve been before.  I’ve grown and changed since its start and it is such a show of my spiritual growth.

I am so blessed.  Each day I am alive I feel deeper and deeper God’s love for me and how much I am thankful for His love and devotion.  Even though I struggle daily with my pain and suffering, I know that God has a plan for me and I am not nearly as wise as He is.

God Bless…..

Neurology of the brain

Well, I don’t have any tumors or cancer related brain problems (which I was told about it early December).  However, the Doctor presented my case to the Brain/Gamma Knife Surgery Conference on Friday and he called me today. (January 9, 2012)

Due to the fact that in 2008 I had Encephalitis and a traumatic brain injury (TBI) in 2009, both of which cause swelling in the brain, he said that it has cause a few mini strokes and some brain damage that cannot be restored.  The TBI is what they feel has cause the most damage.  He compared my recent MRI with my last one in 2008 (shortly before the Encephalitis) and a CT scan after the TBI occurred.  Since I didn’t receive proper treatment afterwards (don’t even get me started on that mess) I suffered permenent damage.

The doctor does not feel I’m at risk for any further strokes because he feels it was all due to bleeding & swelling caused by the TBI.  Unfortunately, there is nothing he can do to help me with my pain or the other symptoms I continue to suffer due to the damages.  Pain management was suggested.  I’ve seen a pain management specialist in the past and with the amount of drug allergies I have to pain medications, it does not look promising.  Just my luck.

The effects may diminish over time or they may stay the same.  It’s all in God’s hands now.  I guess I’ll continue to have bad days and good days.  I have to watch further head trauma, since that is a risk.  Pain has been so much a part of my life over the last 19 years I truly believe if I ever woke up and didn’t have any pain, I’d think I was dead. 🙂

<sigh> Well, at least I tried.</sigh>

10 Things I’ve Learned From Living With Chronic Illness

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.)

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when its just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally, I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard.  Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as complete acceptance, there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine“sometimes even healthy“ to feel angry and frustrated but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything:  “emotions, symptoms, and otherwise“ that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to cure me of my illness, it certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom; but I make a  point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one until I realize that everything is indeed okay

Seven Times

Seven times and I’ve lived to tell the tale, lived being the operative word. 🙂

The first time was so surreal.  Nothing like hoovering about ones body in the void and wondering what the heck is going on.  It was only my second time under the knife and I had only heard vague stories about out of body experiences; but was this one?  Blipping monitors, rushing, masked figures working over a body that was so familiar to me.  Being jolted backwards and darkness until I was awakened from my deep slumber.  Maybe it was a dream, I’m not sure; but medical records don’t lie and there it was, in black and white and me, never having been the wiser.  Like they say, what we don’t know won’t kill us.

The second time was self induced.  I tried to escape this world of pain and misery that at the ripe old age of 25 was making me hate life so desperately.  One pill, two, whole bottle gone.  Sleepy, so sleepy. I lay down and drift.   Then, I wake up.  I don’t feel so good.  I’ve thrown up and I smell of it and sweat and I remember what I’ve done. I look around groggily and I’m still here.  I’m still in hell. Great.  Best laid plans and I can’t even get it right.

Third times the charm, right?  WRONG! Another bad anastesia episode.  I guess I have trouble with that stuff; because it does a number on me. Makes me die.  I guess I should’ve known that; but as luck would have it, I didn’t know. 

Number four.  “Slow down!  You’re going too fast for all this rain. We’re gonna get hurt.”  I stammer out as the car flies down the highway.  He steps on the breaks and we hydroplane out of control.  I see us flying backward with headlights staring us in the face.  I’m scared.  I scream, “Oh dear God, please don’t let us get hurt.” Off the road, up the embankment we fly before tumbling over and over down the side and land, hard on the car’s side.  We’re not hurt.  The car is; but we have survived the horror.

Number five was so unexpected.  Who would’ve thought that in this day and age that a woman would almost die in child birth.  But, low and behold, there I was, about to give birth to my miracle and I crashed, hard!  My parents, my husband, right there with me and nothing anyone could do about it as I fought a life and death battle for myself. But the end result was I got to hold my little boy and if I knew then what I know now, I’d do it again.

Number six was interesting.  I have heard of people who this happens to; but I never thought I’d experience it myself.  I’d driven out of the rain several minutes ago and the sky was clear.  I stepped out of the car and got ZAPPED!!!!  Lightening hit the ground where I was standing and I felt the ground kiss my butt!  I embraced the darkness for several minutes before I heard a little old man screaming about me being struck by lightening and how my shoes, which were now glued to the ground in front of me several yards, were all blackened on the soles.  Good thing was I was at the VA Clinic and had medical attention instantly. 

The last time, Lucky number seven, was a gift from God for sure.  As I lay on the floor, being kicked to death, God spoke to me, telling me to open my eyes, even when I’d already given myself up for death to take me.  God wouldn’t let me give up.  He urged me on until I finally opened them to see the tear streaked faces of my son and his best friend, and got a surge of energy I didn’t know I had to help us all. 

Since going back to God’s way, I have discovered that even though I am not privy to his thoughts or plans, HE does have a plan for me and it is not to die.  At least not until HE decides it is the right time to die.


The look of pain……

Parody on the song “Sound of Silence” by Simon & Garfunkle that I made about my battle with Lupus.

Hello Lupus you’re not my friend
You’ve come invading my body again
Because you’re sneaky you come creeping
Invaded me while I was sleeping
And the pain runs rampade in my brain
Still remains
Within the world of Lupus

In this world I walk alone
Joint pain, aching body out of tone
‘Neath my skin is a brewing battle for control Cells destroying, blotch rashes take their toll
When my eyes fall heavy from my internal fight
That split the night
Within the world of Lupus

And in the naked light I saw
A rash spreading on legs and arms some more
People talking without knowing
People hearing without understanding
People seeing but blinded to the facts
That I’m a wreck
Within the world of Lupus

“Fools”, said I, “You do not know
Lupus is wreaking to a life
Hear my words that I might teach you
Take my arms that I might reach you”
But my words, like silent raindrops fell
And echoed
Within the world of Lupus

And the people walked away
To live their lives another day
And the signs still remain
So unchanged And the sign said, “Lupus is a killer in my life
And I am still fight the fight”
And live in the world of Lupus

Hello world!

Welcome to my world on the web!  My last blog was deleted, lost to the great internet void and I’ve got to start all over again. 😦  So, here I am. 🙂

Life is craZy these days!  I’m back in another Lupus Flair and feeling miserable.  I’m back on Prednisone and not too happy about it.

In the last two years, I’ve been flairing more than usual.  Too much stress, I think.  I discovered in January that I’d had two mini strokes caused by a Tramatic Brain Injury I suffered in June 2009.  Bleeding on the brain is what caused the strokes and the after effects have been horrible.  Such is life.

I’ve become a teacher of the children in my chruch and I’m loving it.