My Computer

Okay.  So if you follow my blog, you know that in THIS post, my husband told me if I put a snake around my neck and got photgraphic proof, he would buy my anything I wanted.  ANYTHING.  So I said, "Anything???"  HOT DOG a new computer! 

So.  I did the deed, and I got my reward.  But it was not without MANY hurdles, the LEAST of which, IF you can imagine, was the snake!

I bought my computer on June 6.  Yes, that's 34 days ago.  When I got it home, we were preparing for the MG Walk so I didn't set it up yet, because I was busy making jewelry.  SO.  The day I decided to open the computer, I had to muscle it out of the box because Doug was taking a snooze.  And it was HEAVY.  So I put away all my laptop stuff, and wrestled this behemoth (comparatively) out of its box with all of its packing material.

I finally get it all up and plugged in and all that good stuff, and turn it on.  Waiting for the lovely tilt and touch screen to light up with the Windows thingy.

{crickets}

I got an error message saying the boot disk wouldn't load.  Now, as you know, I am about as tech savvy as a potato, so that meant nothing to me.  I call the Geek Squad, because I bought "black tie" protection for my precious new computer.

A newbie on the squad told me I had to bring it back, because it was most likely a manufacturer's defect.  I'm like, "I live over an hour away, and it's not exactly easy for me to get out...don't I have any other options?  I have "black tie" protection...doesn't that mean you come out and fix it?"

"Um, no ma'am, you didn't purchase that option."
Me: "Well of course I didn't."

So.  I called back to talk to a manager and got some kid.  After telling him the whole story, and that I live an hour away, and that I have MG and it's really hard for me to get out, he puts me on hold, comes back a few minutes later and says, "Okay.  We're going to ship one to you.  You'll have to put the old one back in the box that the new one comes in, and send it back so you won't be charged twice."

Me: "You pay for shipping it back, correct?"
Dude:  "Yes.  I just want you to know, we don't normally do this.  This is really an exception."
Me:  "Well, thank you from the bottom of my heart.  Heaven forbid your giant conglomerate be inconvenienced when I could just wait for my husband to come home, pack up my cranky child, my MG self, and spend $30.00 on gas driving back and forth to get a new computer to switch out for the OTHER new computer I bought from YOU that should WORK but doesn't through no fault of my own."

No, I didn't really say that.  But I wanted to!

The saga continues.  So THEN, he says it will be here between June 20-25.  Okay, annoying, but my other computer at least still works.  So the 25th comes and goes.  I call the customer service number, and ask them when I will be receiving my computer.

Woman with nasally voice: "Is Douglas there?"
Me:  "No, he's at work."  Duh.
Nasal woman:  "Is there any way you can call him or do a conference call with him or something?"
Me:  thinking, yah, let me just activate my wonder twin powers and send him a telepathic message. "No.  There is not."
Nasal woman:  "Well I'm sorry ma'am, but I cannot discuss this account with you because Douglas's name is on the account."
Me:  "DOUGLAS is my husband, and it's MY comptuer!"
Nasal woman:  "I'm sorry ma'am, but we can only talk to Douglas."
Me: AAAAHhhhhhhhhhhh!  "Fine, he will call you."  Click

So I call Doug, and he calls them, and they tell him this particular computer is on backorder and they have NO IDEA when it will be in. (Thank GOD they didn't tell me that....they might have compromised national security!)  M'k.  I'm NOT happy.  And all the emails from Best Buy telling me to enjoy my new computer are NOT helping.

Then they sent me a survey about my recent purchase.  Mmmmuuu haahhhahhahahahaha.  THAT was fun.  I'm like, "Oh, you mean the 25 pound paperweight sitting in a box on my floor?  It's a fantastic paperweight, but a crappy computer!"

SO FINALLY, I decide to just take the stupid thing back to the store, on July 4th, when Doug is off work, and my parents can watch Jacob, AND it's 104 degrees.  (Note to self:  next time something is broken, take. it. back. immediately.  Do. not. pass. go.  Do. not. collect. $200.00.)

We pack everyone and everything, including my walker, because I know I won't be able to walk through the parking lot and then the store without it.  Our intent was to return the computer and look for something different since apparently there was not one single Best Buy store in the country that had the same computer since it was on back order indefinitely.  Logical conclusion, yes?

Not so much.  Customer service was slammed and of course they had one girl working there.  I immediately asked to speak to a manager.  It must have been the crazed look in my eye, the gravel in my voice...or maybe the slur and drool dripping down my chin, but regardless, she didn't hesitate.

So this guy comes out.  Imagine Peter Brady in need of a haircut, light hair, and 30 pounds heavier.  I'm like, REALLY?

So I tell him the whoooooole story.  He looks at his computer, and VERY nonchalantly says, "Oh we have one right here.  In fact, it looks like we have four."

Me, jaw dropping, hand hitting the counter, voice raising completely of its own volition:  "ARE YOU KIDDING ME?????"

Peter Brady in a little sing songy voice: "Nope, it says right here we have 4.  I'll go check.  Did you want to just swap it out then?"

Me, still in utter shock, amazement, and increasing irritation: "Sure {Peter Brady} let's just swap it out."

He comes back, with MY SAME COMPUTER, and I say, "I'm not moving until you show me this one works."

Peter Brady: "No problem, come right over here."

Mr. Geek Squad hooks it up, it runs through the beginning stages, and Mr. Geek helps others while checking back on my computer every couple of seconds.  It gets to the screen where you "name" your computer.  Mr. Peter Brady says, "Well, it looks good to me."

I say, "I'll wait until HE {pointing to Mr. Geek} tells me that."

Peter Brady: "Well, I'm glad we could get this swapped out for you so easily."

Oh no you did not just say that!!!

I lost it.  I mean lost it.  The only thing that made me more angry than what he said is that when I get REALLY angry I cry.  Which makes me even MORE angry.

I'm like, "Really?  That's it?  No, 'sorry for your inconvenience, what can we do to make it up to you?'  No, 'thanks for your customer loyalty even though we FUBAR'ed big time?'  No, 'here's a $20.00 gift card for your trouble??'  Look at me!   {By now I'm SITTING on my walker because I can't even stand up}  Do you think it's easy for me to get out?  I have a neuro muscular disease that gets worse with stress and heat, both of which are in HIGH quantities today. THIS was not EASY for me to get out here to return a BRAND NEW computer that should've worked in the first place!"

Peter Brady: "Well, what do you want?"

Me, incredulous, shaking my head, "Seriously?  I don't know, a gift card?  Money for the gas it took to come out here and back AGAIN to get something that should have worked in the first place?"

I was SO beyond angry and irritated that HE actually asked ME what I wanted.  Whatever.  I ended up getting the second season of House on DVD.  I was still so dang pissed off.  UNreal.

NO ONE values customer service, customer loyalty...I was just another number with an "easy" fix.  He probably blogged about this totally drama-filled experience with the crazy lady with a walker.

{Sigh.}  Nothing is truly easy in this life.

There's more....but my hands are about to fall off, so stay tuned....

Thankful Thursday

Oh goodness.


Yesterday was not a great day. I was so frustrated. I was angry. Disappointed. Scared. Doubtful. I'm homeschooling my 4 year old son, Jacob. He JUST turned 4, and we just started "offcial" school this past Monday. The first 2 days were awesome...yesterday was a debacle. Mess. NightMare.


I started thinking, what the heck am I doing? I have a chronic illness (more than one really, but who counts?)....I already can't keep the house clean. I already have virtually no life outside the 4 walls of my house. Sometimes I need a total break from Jacob because he's so loud and busy and energetic, and now I'm going to HOMEschool so he's here ALL. THE. TIME??


But...I could probably give you 50 reasons RIGHT NOW why we want to homeschool, not the least of which is that Jacob is super smart, and would be bored to tears in public school. So the top three would be: first, so he can learn to the full extent of his ability, second would be to keep ME from all the nasty germs he would bring home. Third, and really, this should be number one, is that we simply don't agree with a lot of what public school teaches. We don't want Jacob exposed to things he doesn't NEED to be exposed to: temptations he would only face with 20 of his peers around him every day, the coarse language and joking, the drugs, alcohol, all that garbage. And I've taught in public school, grades K-8, so I know what happens. And that was 15 years ago.


I'm exhausted but not really sleeping....this morning I was up at 4:37AM. Two nights before that I got about 3 hours of sleep, 15 minutes at a time. I'm on medication that has side effects that cancel out other side effects that have side effects that....so who knows.


Then why, you ask, is the title of this post "Thankful Thursday? Seems like all you have done so far is whine and complain."


Point taken. I just wanted to set the stage and let you know that I don't FEEL particularly thankful. SO when I get this way, I do posts like this, and list the things I AM thankful for...to try get my attitude out of the crapper. Sometimes it works, sometimes not, but it's worth it. God has done so much for me...the LEAST I can do is remember to thank Him for it.


1. I am thankul that I have a healthy, precious, smart, talented and energetic son who thinks I hung the moon.
2. I am thankful that I have a husband who has stood by my side for over 10 years, watching me struggle with this illness and never walking away. Has he been perfect? Of course not. But I know many a man who would or could not have dealt with what he has over the last 10 years. I love you honey.
3. I am thankful that I have this computer that I get angry with every other minute because it connects me to friends old and new...and keeps me connected in a huge world that I can't physically get into more often than not.
4. I am thankful for medication, and treatments, while unpleasant at times, that allow me to live some semblance of a "normal" life.
5. I am thankful for a God who doesn't give up on me even when I give up on Him. Who isn't disappointed in me, because He made me, and knows my every thought before it even enters my mind. Who, by His Grace, saved me from an eternity in hell, apart from Him, even though I didn't deserve it. Who chose to allow this disease to enter my life, that it may bring me closer to Him...and maybe along the way, touch a life or two.

Serenity??

Serenity. Tranquility. Peacefullness. Even-temperedness. Cool-headedness.

Yesterday I was told I needed the Serenity prayer. I'm going to a counselor and yesterday was all about me and anger. I have been so angry lately. So easily overwhelmed.

Tim made a good point: If you have a scale of 1 to 10 on the stress in your life, most everyone wakes up with a zero. They don't wake up wondering if today they will be able to function. If they will be able to fold that basket of laundry or be able to take care of their child.

So when I get up, I'm already at a 6 or 7, just being me. Isn't that lovely. (Some of you who know me are going Mmmmmm-hhhmmm! I KNEW that girl caused stress!) Just kidding. But really, what he said made so much sense. If I seem to be jumping down people's throats at the drop of the hat, it's because the dropping of the hat was the proverbial straw that broke the camels back. That one last drop you think you can squeeze into the glass before it spills over.

But that drop...that one tiny drop that in and of itself is nothing! It's No. Big. Deal. Insignificant. Unless you are already so full of drops that one more just puts you over the edge. I am not an angry person by nature (well, not anymore!) I'm fun. I used to be fun, anyway. I like people. I want to be part of society. I want to in the mix, part of the group, ya know?

But many times I can't. And those are big drops added to my glass. So when the power lines are making lightning in my tree, and I'm setting up for a garage sale and my dog pees on something for sale....when Jacob is being particularly difficult and my TV freezes for the 13th time and my computer isn't working.....I overflow.

I need to focus on what I CAN do...and accept what I can't. And try to change what I can. ERGO, Serenity Prayer: (or the first part of it anyway)

God grant me the Serenity to
Accept the Things I cannot change, the
Courage to change the Things I can, and the
Wisdome to know the Difference.

Chronic Living

For my type of Myasthenia Gravis (MuSK+), there really isn't remission. Many people with AChR+ MG can have a thymectomy, and boom, remission. Not all, certainly, but a lot. Others go into medically induced remission; they are on medication for a certain period of time, and then can back off of it and still be okay.

I HATE the word chronic. Listen (well, read!) this: Chronic: persistent, constant, continual, incessant, unabating, lingering, lasting, enduring, perpetual, eternal, permanent, ceaseless, endless.

This is where choice comes in. This is the world's definition. Although it can be true, it doesn't mean it's absolute truth. Asolute truth is that because Jesus paid the price for my sin, I will live eternally (chronically, if you will!) in heaven. And in heaven, there is no pain. No more tears. No trach. No arthritis. No diabetes. No scarred vocal cords. None of it. It will all fall away. Oh, glory, I cannot WAIT!!!

In the meantime, I struggle! I will be the first to admit it. Just yesterday, I was flippin' out because, barring God's complete healing here on earth, I have to deal with this BS disease every.single.minute.of.every.single.day. And I get angry. I get really, really ticked off. I can shake my fists and stomp my feet and hold my breath and have a good old fashioned tantrum, but it does no good. I'll still be sick. Sure, maybe I feel better for a while, and I'm not taking away from a good ol cry, because that can be very cathartic.

I'm having trouble with my trach. It's not staying in all the way, but it's not like, popping out either. It just slightly moves forward, and rubs on my natural, God-given trachea, while at the same time narrowing my airway. That doesn't feel so good. Then the outside gets all raw and irritated as well. I'm not sure how to fix it, and I don't really want to go to the doctor right now, because he'll probably just say, "It will toughen up." That's his answer for everything. Or he'll tell me I have to take it in and out more often, which at this moment in time would be excruciating. It's really hard to cause yourself pain on purpose. Seriously!

I'm having trouble with my eyes. These two syptoms, the trach and the eyes, are the two WORST. So exhausting. So draining. The pain, the double vision, headaches. Okay now it just sounds like I'm whining...I'm REALLY trying not to... My point is that if I concentrated on this every day, I would be a nutjob. (As my sister would say, bat sh!# crazy!) I have a life to live. I am a mom. I am a wife. I am a friend.

I can't be all of these things at once, and while it makes me insane, there's nothing I can do about it. Because when I try, I either end up like I am now, with double vision and completely exhausted, or worse yet, in the hospital. I just wish I could get across how difficult it is to accept limitation. Even after 10 years. Even after being almost dead more than once. Even after being in a wheelchair for a while.

Most of you didn't know me "before." Some did...but yesterday as I'm having my little melt-down, I just stopped and said, "I can't believe this is my life!" While I wouldn't trade it for ANYTHING, I still struggle. I'm human. I remember the days of freedom and independence, of productivity and doing for others. Now, that's all pretty much gone.

So....I'm going to re-read all the definitions of chronic, and apply them to love. God's love for us all is ALL of those words. And I'm going to try to have my love for others to be the same. A challenge, for sure, but it's better than applying all those "permanent" terms to my health!

If you are struggling with chronic illness, if you have found a way to accept or cope, please leave a comment or e-mail me. We need to stick together! Even if you're NOT dealing with a chronic illness... Is there something YOU'VE had to accept that has been really, really tough?

Thanks for reading! God Bless!!