Tuesday, December 27, 2011

Blessings... Clearing a few things up

Blessings by Laura Story 
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights 
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights 
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Every time I hear the above song, I sing it at the top of my lungs.  It has always brought me so much peace.  That is to say that I am totally at peace with all that is happening inside my brain, or not happening!  My hope is that some others would read these lyrics and take them to heart.  I get that some of my family members may be hurting that I am no longer my old self, and because of that, they say hurtful things.  I wish that they read the lyrics, listen to the beauty of the song (link below) and especially allow the last paragraph to make an impression on their heart.
I am writing this blog as an outlet, and as I mentioned in my last post, as a way to possible reach out to others in  my situation, so I don't feel so alone with my struggles.  I don't write for pity.
Also, as I mentioned before, the Holiday's were especially tough for me.  They were made even more difficult by comments made by family members.  I learned that a certain member of my family thinks I have been taken over by the devil and since I have given him control, that is why I feel like I am losing my memory; or something along those lines.  Really??? That is the craziest thing I have ever heard!  I guess there opinion doesn't matter much, since they believe I am going to hell for being Mormon.  Either way, I am screwed if you ask them!  But what their comment, along with a few others made, allowed me to realize, is that everyone thinks this is about me forgetting things.  Oh how I would give anything if that was the case.  If that was all I had to deal with I would be golden!  I would be the post-it note queen!  Unfortunately, this disease is so much more! For those that don't deal with me everyday, here are the symptoms I am fighting with:

  • Memory Loss
  • Difficulty performing familiar tasks
  • Problems with language
  • Disorientation to time and place
  • Poor or decreased judgement
  • Problems with abstract thinking
  • Misplacing things
  • Extreme mood swings
  • Change in personality
  • Loss of Initiative
These things are no joke!  See, I wish I was just a little forgetful! But that isn't the case, nor is the case that  the devil has taken over my memory!  
One more myth I would like to clear up... I haven't thrown in the towel, I haven't resigned myself to 4-6 more years of life.  Yet I am realistic in regards to what the current research is, which means preparing.  Every so often I get a little teary eyed when I think about not seeing my kiddos do great things. But mostly I think about how lucky I am to have been given 5 years to prepare them and to jot everything down so they can remember me just the way I want them too!  Not to mention the fact that I have been given an opportunity to dedicate the rest of my life to my family.  Had I taken my own chosen route, I would still be the same old workaholic, climbing the corporate ladder.  And then what, my kids grow up knowing there mom was a fantastic employee, but didn't know how to make macaroni and cheese or get grass stains out?  Given the choice, I am truly enjoying the BLESSINGS!  That doesn't mean I have thrown in the towel.  Believe me, I will fight to the end.  If you know anything about me, and you are reading this, you should know that I am a fighter!
My best friend and I have a little joke ...We say that up in heaven when we were all choosing our strengths and weaknesses that we could handle here on this earth, God gave us a few options, and we kept telling him "no, we are tougher than that, what else you got?" And finally when there were only a couple of choice mortal lives left, and no one at all wanted them, we volunteered.  Now I know that can be misconstrued to look like we are holier than thou, NOT our meaning at all!!!! It just means, we have had a couple of pretty crappy roads when all is said and done.  But in the end, I look back and go, "I DID THAT!"  I truly did that!  I can tell some pretty shocking stories about my life.  Instead, I would like to let you know, that I have come out so very strong!  I am a fighter, and typically when I choose a fight, I win!  So, no I am not throwing in the towel.  Yet, I know that there is a chance, some of you may be caused pain by what my life has in store.  I can only hope that you will realize that "the aching of this life
Is the revealing of a greater thirst this world can’t satisfy".  
I am so grateful for the comfort I have in knowing that I am sealed to my family for time and all eternity.  I am grateful for the work I am able to do in the temples to continue and grow my heavenly family.  And more than anything I am grateful for my Lord and Savior, Jesus Christ, who came to earth and chose to die for me, because Heaven only knows some of the sins I have committed.  And with out the power of repentance I would be in a world of pain right now.  Instead, I am in a world of peace.  I am surrounded by people who love me and I am certain that many blessings will come as I face this trial head on!  So click on the link below and listen to the song.  Picture me singing at the top of my lungs, maybe I have a tear or two, but mostly I have a huge smile and I am thinking my Heavenly Father for every clear moment I am offered!


Sunday, December 25, 2011

Christmas with Early Onset Alzheimer's

It's clear that I won't be having anymore "big girl" jobs, as I have often referred to my cool jobs and also to the upstart of Maxx V.  I am so very grateful for the opportunity to continue to wait tables at Mere Bulles. The owner and management have been amazing to me, not to mention my co-workers that have to work along side of me.  Yesterday was my first day off, besides Sundays in what feels like ages!  Of course they would tell you differently, as they refer to me as the vacation queen... But I honestly didn't realize how important going to Mere Bulles was to my reality these days.  It has become my normal, and I now see that when I don't have the normal, I am a mess.
This is my first Christmas since my Early Onset Alzheimer's symptoms have really set in.  And it is horrific!  Which is heartbreaking to me.  I have always tried so hard to focus on Jesus' birthday and the huge sacrifice God made, to send his son down to earth.  Knowing that once he was born, he would suffer so much pain and persecution, but that he would save us all.  I am so very grateful for His Birthday!  But my every breathing moment is so hard.  I mean, really hard, I feel like an elephant is sitting on my chest it is so hard to breath.  I know that it is anxiety, anxiety isn't new to me.  I already take medication for it, and for years it has stayed in check.  Now it is as if I have lost control.
I tried so hard to get ready for church this morning, but I am literally scared out of my mind to go. I had nightmares last night about how mean all of the ladies were to me.  So we decide not to go and then I am dealing with the anxiety of going to RB's family Christmas.  I want to go. It is so important to him.  But it is as if my feet are made of cement.
So now as to why I am having these issues.  I think it is two-fold.  One is medical, one of the symptoms is the depression and inability to really "care", based on what is working and not working in my brain.  I still have enough sense to know that those symptoms alone make me a completely different person than I used to be.  The super happy, cheerful, girl with the desire to serve anyone and everyone is gone.  And I would be an idiot to now know that other people have noticed as well.  Whether it is my loved ones pointing out my attitude to me, or friends who have bailed on me because I'm just not the same anymore.  I know that I am not good anymore. And I have always had an issue with unhappy people... Thinking that they should choose to wake up on the right side of bed instead of the grumpy side.  And now I am one of them.  I try so hard to smile and be happy, and then I am reminded that I don't look truly happy.  I am reminded that I am bringing others down.  So this is the second part of my anxiety issues.  I just don't feel good about being out in the unknown, and having people think that I am grumpy.  When I really am not, I am just not able to show happiness these days.  It is as if that emotion isn't connecting anymore.  I would give anything to have it connect... You hear stories of Alzheimer's patients being "flat" and "emotionless", and that symptom truly sucks, I can't say anything else about it.
So what I realize is that when I am at Mere Bulles, they know what to expect from me, and I am very comfortable with what I will get there each and every day.  But on days when I have to be around people who don't know me well, I am struck with the overwhelming thought...They are going to think I am grumpy and not nice.  Those are two adjectives that I am not comfortable with in describing me.  The only way to prevent that, is to not leave my house.  And that isn't very healthy either.  So what is a girl to do?
In my deep fear and anxiety, I decided to blog.
Don't worry, I am also journaling a lot.  And working on my book.  But I decided that if I can help one other EOA patient feel not alone, I have done some good.  So I will do my best to put this out there.  I feel as if I am being eaten alive from the inside out, and I wish I had someone to talk to that is going through the same thing.  Until then, I will send this out into the world wide web, and see if anyone finds me that understands where I am coming from.
Please don't mistake me as a bah humbug!  I am so very grateful for Christ.  I am grateful for my church and the opportunity that it affords me in the next life!  I am grateful for everything that this holiday holds!  But I guess it just doesn't show on  my face.  For that, I am sorry.
Merry Christmas to all!!!! Don't take anything for granted! Smile from the inside out, everytime you are given the opportunity!