A Few Grateful Words

Wow.  I have some serious "thanks" today....

First of all, I'm thankful that my pheresis went so well on Friday, and am praying it goes just as well today, if not better than Friday!

I also want to thank the many friends and family who have generously donated to my Give Forward page that Jen Walsh so lovingly created for my family.  I was overwhelmed she did that, and I'm overwhelmed by the generosity of my loved ones.

Thank you to all of you who pray for me, for my family, and for my other MG friends.  Please continuing praying for a cure.

I'm so, so thankful to Karen and Kerry, my cousins and friends, who haven given my son a gift I could never give him....They are camping, and they took my son, so he can have 5 days of being a "normal" little boy.  Playing with kids outside, on a playground, fishing, swimming, running around and playing tag...all the things I cannot do with him.

Even after the first night of him waking up 4 times, screaming, being exceedingly difficult, they are keeping him! (I haven't dared ask about last night because I have a treatment today and I don't want to be stressed out.)  I told Karen I was going to come and get him yesterday because I didn't want him ruining their camping trip by them not getting any sleep...and she insisted he stay.

That touched my heart in a way that few will ever understand.  My heart breaks at the things Jacob has to miss out on because of my illness.  Even as I write this the screen is blurred by my tears.  The gift that Karen and Kerry are giving my beautiful child is priceless.  Thank you girls.  I love you both from the bottom of my heart.

And thank you to my mom and dad, who are always willing to bail me out.  They were going to totally rearrange their plans so that they could take Jacob today if need be.  I had told them they didn't need to watch him, so they made plans to do other stuff....and then yesterday, I call my mom in a panic because I'm thinking I have to get Jacob and find somewhere for him to go...and she calmly says, "You just bring him here, honey.  We'll figure it out."

I'm so thankful to have parents who love me so much.

There's so much more, but I can't really see to type anymore, and I have to get going for my treatment.  Thank you to all of my wonderful friends and family...you ALL are a gift from God.

Wiped Out

Had pheresis yesterday, thank the Lord only 2 sticks.  But it runs slower here than at U of M, so it's more taxing on my body, and I get sooo tired.

Then today we dropped Jacob off at a campground with the infamous "K's" (so together we make the 3 K's...) and their families....they invited Jacob to camp with them while I have pheresis and recover.  He is in heaven already...and as much as I'm looking forward to the peace, the break.....I miss him already!  Must be a mom thing.

Anywho.  Doug found dry rot under the sideboards on the house, so I have no idea what we're going to do now...there are so many options.  None of which I have the energy to deal with right now. I'll explain more when my eyes are staying open and a bit more focused. : )

"Peaceful Passage" by Kim West, Ph D.: A Review

I just finished the book Peaceful Passage, a moving exemplar of how wonderful an at-home, end-of-life journey can be.  Kim wrote this book after her own personal end-of-life journey with her mother, who was diagnosed with both brain and pancreatic cancer at the age of 78.

This book really took me by surprise.  It is very direct, straight-forward, and has innumerable tips, suggestions, directions, and guides for how to deal with the end of a loved one’s life.  I wanted to review this book because I have a chronic illness, and I was very interested in the kind of advice a “healthy” person would give.

I found the first two chapters incredibly informative for me personally.   I took notes, made comments about what I’M going to do right now, like establish medical power of attorney, legal power of attorney, make a will and name an executor of the will…. It was astounding how practical and logical Ms. West lays out exactly what is needed.  It's a wonderful "how-to" for things that you may never think of when "the time" comes.

The author also talks about the importance of following your loved ones' wishes about their end-of-life experience.  Some of this book was difficult for me because I want exactly the opposite of what Kim's mom wanted.  She wanted to die at home, and I want to be in a hospital, or hospice, with no pain, even if that means being completely out of it.

There was one thing about this book that I had an even more difficult time with.  There were several typos in the book, especially in the first 39 pages, and as a "grammar freak," it was extremely bothersome.  Having said that, I am so glad I continued on with this book.  The amount of information for someone who wants to die at home is amazing, from the big, important decisions, to the little tips like layering the bed with more than one sheet, in case there's an accident in the middle of the night.  I would definitely recommend this for anyone who wishes to have this particular end-of-life journey with their loved one, or their own journey.

If you would like to purchase Peaceful Passage, it is available on Amazon.com, or you can go to http://www.peaceful-passage.com/order.html for the best price.

You can check out Kim West on facebook at https://www.facebook.com/peacefulpassage,

or her own website at http://www.peaceful-passage.com/ 

About the Author:
"Kim West holds a PhD in Clinical Pastoral Counseling an dan M.Div. in Counseling and Family.  Peaceful Passage represents a merging of her years of life and counseling experience with new skills acquired as the primary caregiver during her mother's final journey." -from the back cover









 I received a free copy of this book/Ebook/Product to review. I was not required to write a positive review nor was I compensated in any other way. The opinions I have expressed are my own. I am disclosing this in accordance with the FTC Regulations. I am part of The CWA Review Crew.

The Power In Prayer

Once again I am in awe of how, at times, God moves so quickly when I pray, and ask others to do the same. 

We have the blessing of Love INC coming in August to help scrape and paint our house.  We live in a pre-1900's farmhouse, and it has its original wood siding.  We try to paint every year, but with my health, it's just not possible.  I cannot help Doug very much, and we don't have any family nearby.  So I was so thankful, and so blessed when I got an email saying that Love INC's Skills Ministry would be doing this.  Thank you Lord!

I always worry about Doug trying to do too much.  He always DOES do too much anyway, but between the animals, Jacob, and my health, not to mention a full time job where he's the boss... there's not a lot of time for other things.

So Doug and I were both so thankful and happy that this was going to be done.  But Doug needed to replace a few boards.  So he did, and then he found dry rot underneath.  I'm not sure what that is, but I know it's bad, and I know it needs to be replaced.

Well, I asked my facebook friends to please pray that SOMEHOW the finances would come in so we could take care of this.  We prayed.  I've been working my fingers numb trying to make jewelry to put on my site to sell to go towards the at least $3000.00 we will need to do this.

And then I get an email from one of my fellow MG'ers whom I had the pleasure of FINALLY meeting in June.  She asked if she could set up a page for me and my family on Give Forward's website.  I was like, you would do that for ME?  She is amazing. SHE has MG, she has 2 children, a husband, a home to care for, and she is a very strong advocate for people with MG everywhere.  She's amazing, and she did this for me.  I am humbled, grateful, and so thankful that God hears and answers prayer.  You can check out her wonderful page for me at Give Forward's website http://www.giveforward.com/rallyforkerri.

God is good, all the time, even when things are tough.

The Rest Of The Story

I realized I never finished my new computer saga... You can read the first part here if you missed it. 

So I finally get my computer home, set up, working, and get ready to go online. {Sigh of happiness}.  I put my USB thingy in (I'm sure it has a technical name, but it goes into a USB port, it's an internet connection, and that's about all I know), load the disc in my super-cool-on-the-side-of-my-monitor/computer-disc reader, and install the VZAccess Manager.  Goes off without a hitch.

Then, I go to sign on to the internet.

{crickets}

ARE YOU KIDDING ME???  So I call Verizon, and TRY to remain calm, because they have no idea what I've been through already.  I push the button for technical support.  Not customer service, not sales, tech support. And so when the woman answers (after being on hold for 5 minutes) I ASSUME she is in tech support, and we start troubleshooting the problem.  After talking with her on the phone for TEN minutes, she says, "Okay, I'm going to send you over to tech support."

I'm FUMING.  I HATE it when people do that.  They give customer service a chart to go through before you really get to tech support.  What, am I , an idiot? Well, in this case, yes! That's why I need tech support not customer service!

So the woman puts me on hold, and I wait for tech support.  She goes to connect me, and I get DIS-connected.  My blood pressure has NOT fared well these last few weeks.

So I call back.  This time I get right through to tech support because I "calmly" explain that I was disconnected.  So I get Mr. Rogers on the other end.  I'm like, I need tech help, not a lesson in shoe-tying.  So we go through the whole story again, and he finally tells me that the version I have isn't going to work, and I need a new disc.

Of COURSE, this is the 4th of July, but he says he will send it 2-day priority, so I'm thinking I'll get it Saturday at the latest.  Doug said it would be Monday before I get it.  UNreal.  I once again haul old Old Faithful Laptop.  {sigh}

So on Monday, sure enough, the disc comes in the mail.  I go to my computer, install the disc, go online....NOTHING.

Yes, I am serious.  Even I can't make this crap up.

So I call Verizon.  Same thing.  Customer service, pretending to be tech support.  At least this time I don't get disconnected.  The girl I talked to so was nice, and patient, and it took 45 minutes, but hang it all, we did it.  We were BOTH cracking up by the end of the call.  The kind of loopy, way too tired, over the edge giggly laughing.

SO.....after after 33 days, countless hours of banging my head on the wall, 2 trips to Best Buy (one in 104 degree weather), hours on the phone with "customer service", tech support, and who knows what else...

And I FINALLY. Have. My. New. Working. Computer.

{cue the heavens opening up and start the Hallelujah chorus!}

Chronic Pain And Life

You know, I feel like all I've done is whine lately.  I'm trying.  I really, really am trying.  I'm also trying to get some help for fibromyalgia.  I never realized how many symptoms it has!  Some of the things I was attributing to my MG are actually/also fibro symptoms.  I've tried the two "biggie's" when it comes to fibro: Cymbalta (makes me throw up) and Lyrica (makes me so dizzy I can't walk).

So now I'm on Neurontin.  And Norco for acute pain, which is basically Vicodin.  Like taking 2 Vicodin.  So we'll add that to the menagerie of medications I already take.  And hope it works.

Those of you with severe chronic pain, like sciatica, or nerve pain, or RA, hats off to you....I can't do it.  I can handle a lot of things...the MG, the trach and all the complications thereof, not getting enough sleep, even my ribs popping out (which is excruciating!).  But this constant, chronic, grinding, get-in-the-way-of-my-life, all-consuming pain...Can't do it.  I've been to pain management "specialists" and they put me on an anti-seizure medication.  Didn't do anything but give me spots in the sun.

Just another thing to go along with chronic illness. Doctor after doctor after doctor.  Ug.  And if one of them suggests PT again I'm going to just take 'em out at the knees.

But anywho. On a GOOD note...It FINALLY rained!  I've never been so excited to see gray skies in my life!  It's super  humid, but whatever.

I also had lunch at Doug's work today. He watched Jacob this morning when I went to my GP for pain meds (see above), then I ran to get prescriptions.  Then I got back to Doug's work and one of the guys told me Doug should take me out for lunch. 

He had a bunch of stuff in the freezer from an open house a couple of months ago, so we all ate together, me and all the guys, and Jacob watched out the window for bald eagles. (No, there aren't any there, but he swears he saw one.)  It was AWESOME to get out and have a little bit of socialization, and joke around with the guys.  I mean, they're practically family.  It was fun.  Had a smile on my face today for the first time in along time!

Thanks, guys.

Intrinsic Value

"If people are good only because they fear punishment, and hope for a reward, then we are a sorry lot indeed."  Albert Einstein

This was posted on facebook today by a friend of mine.  I shared it, and it really got me thinking.  Whenever we go to the store, Jacob wants something.  "I'll be good" he says.  When Doug or I come home from a store that we have been at without him, he asks what we got him.  If we give him something, he asks if there's anything else.

Now granted, he's 5.  His world is about him, him and him. 

But sadly, there are many adults like this...except it sounds more like, "What's in it for me?"  Or "What will happen to me if I don't?"

How many people would file taxes if they KNEW there was no punishment for not filing?

How many people would go to to work if they didn't get paid?

Now I know those are "big" issues, but let's take it closer to home.

How many people go to church because they are afraid not to?  Either afraid of being judged, or afraid of God's wrath. I grew up in a church like that.  As long as your butt was in the seat, you had fire insurance, if you know what I mean.  And if you weren't there, you better be out of state or dying.  {And I'm not saying don't go to church, I'm just using this as an example to get to my point.}

This is my question:  what ever happened to intrinsic value?  When did everything become about getting something in return, or doing something just to avoid punishment or repercussion of some kind?

So this is my challenge to everyone who reads this:  do something kind just for kindness' sake.  The whole "commit random acts of kindness" and "pay it forward" cliches have been around for a while.  But seriously, when is the last time that you did something nice for someone else, just to do it? 

I guess I just want people to think about those less fortunate, or lonely, or whatever, and think of something nice you could do for them, without expecting anything back.  Do it anonymously!  That's one sure way to avoid recognition. 

One thing I LOVE LOVE LOVE about my MG Group on facebook is that people are asking me to send jewelry to someone else all the time.  It's crazy.  One person will do it, and the person who receives it will say thanks to their "anonymous" gift giver, and then someone else will want to do it... It's awesome!  And I don't mean because they're buying my jewelry (although of course that is wonderful!)...I mean, to see the real joy that both giver AND receiver get....it's pretty cool.

Just something to think about.  Do you have an elderly neighbor who is alone 90% of the time?  Go visit.  Take your kids.  It's like talking to a history book.  We can learn more from one hour talking to older folks and asking them to tell us about their lives than we could in a month of history books.

Do you know someone who had a recent illness or injury?  Ask if you can clean their house.  Bring a meal over to them. 

Is someone at church looking for a babysitter?  Volunteer your time.

You know what to do...I just really encourage you to think outside the box, and GO and DO it.

Just ONE Thing We Deal With

{The back story for this post is that after THREE years, Medicare keeps sending my claims to BCBS even though I don't have that insurance any longer.  Someone from Medicare told me I had to have BCBS send Medicare a termination of coverage letter (which I've already done twice)....that's how this all began. Oh, and I should mention I tried to call first, but the wait time was over 10 minutes, so I thought I'd try this...SILLY ME!}

Okay, this is the actual conversation I had with a "live agent" on mymedicare.gov website.

Thank you for contacting MyMedicare.gov Live Chat.

KERRI:  I need the mailing address to send a termination of benefits letter from BCBS (for the second or third time).

Please wait while you are connected to an agent.
You are now connected with MyMedicare.gov Live Chat.

Thank you for contacting MyMedicare.gov Live Chat.  My name is Karen.  Can you please verify your first and last name?

KERRI:  Kerri Sweeris.

Karen:  Thank you Mrs. Sweeri. (Um, ya, Sweeri??)

KERRI:  Are you still there? (three minutes had elapsed)

Karen:  If you cancel supplemental policies, you need to call the supplemental company that you are cancelling and tell them to cancel the crossover. {OH my WORD I have done this a dozen times already}  Medicare cannot cancel crossover files.  Please allow 60 calendar days for the process to be completed.  If it has been more than 60 days {It's been 3 YEARS, "Karen"}, please contact your supplemental insurance company.

KERRI:  I DID call them and tell them to cancel the crossover. But Medicare told me I also needed to send a letter TO Medicare FROM BCBS, which I have in my possession, to complete the process.  I've done this like 3 times, and Medicare keeps billing BCBS.

KERRI:  I have not had BCBS for like 3 years. {I say "like" a lot!}

Karen:  I am sorry.  Medicare cannot cancel crossover files.  You do not need to send them a letter.

KERRI: {banging head against cement wall over and over}  I understand that.  Medicare requested a letter of termination of coverage from BCBS.  Again.  I already told BCBS to cancel the crossover.  I just need the address of Medicare to send the letter to. {I wanted to make sure it went to the right "department" or they would say they never got it.}

Karen:  I am very sorry.  Medicare does not have an address for these types of inquiries.
Karen:  Who told you that Medicare needs a letter? {see above for how many times I actually said "Medicare said...}

KERRI:  MEDICARE.

Karen:  Was this by phone?  {no it was by smoke signal, actually}

KERRI:  Yes.

Karen:  What phone number? {What phone number? SERIOUSLY?!?!?}

KERRI:  1-800-MEDICARE {which drives me crazy, by the way, when phone numbers are made up of too many letters....like it's really 1-800-MEDICAR.  The "E" is extemporaneous.  Makes me CRAZY!}

Karen:  I apologize.  There is no address for this.  They might have been referring to something else.

KERRI:  OH my GOSH!

And I clicked "END CHAT"

The chat session has ended.  Thank you for contacting MyMedicare.gov Live Chat.  Have a nice day.

Start time: 1:04:08 PM
End time:  1:18:52 PM

Have a nice day.  REALLY?!?!?  Now that I'm really to brutalize someone and my blood pressure is skyrocketing, yes, I shall have a nice day.

OR NOT.

Isolated

Isolated: 

Solitary.         Separated.   

Alone.                                                                               Detached.  

                         Lonely.


 Sequestered.  

                                            Insulated.                                                                 
                     Exiled.  
                                                                                         Concealed.   


                                                       Forsaken.


 Forgotten.    

This is how I have felt many, many days in the last 6 or 7 years.  

Out of sight, out of mind.
"We'll be praying for you," they all say.
And I'm sure they do.
And I'm thankful they do.
 
But sometimes...Sometimes, I need to see a face. 

I need to hug a neck.

I need to be hugged back.

I need to know I matter. 

Chronic illness is a life altering thing.  It is not prejudice.  It has no favorites. It can strike anyone, at any time.

Live your life TODAY.  No one is guaranteed anything else.  Why live your life worrying about "what if?"  "What if" may never come.

Today is here.  Live it.

Random Letters Volume 98

Dear People Hanging Out Your Van, Over Your Walkers, Parked in Handicapped Next to Me and My Son, Smoking Like Fiends:

REALLY????

Sincerely,
Disgusted


Dear Oxygen Patient Getting Ready To Light Up,

Please wait to explode until my son and I are out of your blast radius.
Thanks.

Sincerely,
Woman Who Think You're An Idiot


Dear Dude Strutting Through The Hospital With A Blue Tooth, Fancy Bag, Spiky Hair and FLIP FLOPS,

You really need to keep a better eye on your things.  That nice leather bag almost turned into Sid the Special Hospital Helper's new toy.  And what's with the FLIP FLOPS?  Are you serious?  Makes me VERY curious to see what's in the bag...

Sincerely,
Observant and Disturbed Passerby


Dear Mr. President,

I can't use your name because as my son says, "That's a swear word in this house!"  I have one simple request:  I would like you, your family, your staff, and all the members of Congress, and anyone else even remotely associated with you that has special benefits and high salaries and no threat of unemployment and super awesome health insurance,  to immediately take a 50% pay cut, pay higher taxes than anyone in the country, and use Medicare for your primary health insurance.

THEN, when YOU get Myasthenia Gravis, and YOUR appeal's appeal of the appeal for you to keep necessary medical equipment gets denied, YOU will know how it feels to be a "regular" human being without privilege.

YOU go on YOUR health care plan and see how YOU like it.

That's what I thought.

Sincerely,
Voting your A$$ OUT In November

Pouring My Heart Out

So I have seen this before, but never really knew how to participate or how to link up, and it seemed I was always on the wrong day...well, I'm up early, it's {dare I say it} quiet, and so I actually got to poke around a little bit, and viola...here I am on the right day and everything.  Miracles never cease.

Then I'm thinking, well, I probably do this all the time...pour my heart out.  There really isn't anything I don't share on my blog.  I'm pretty much an open book.  But sometimes there are things I don't talk about, because of who might read them, or who I might offend, or who I might freak out, (mom) but today, I'm throwing caution to the wind.

Today, it's about depression.  Now everyone in my family knows that I struggle with depression, because half of them do too.  Mental illness runs in my family.  Yes I said mental illness.  Because that's what depression is: it's mental, not physical (although it affects you physically as well), and it's an illness.  It's not a mood, it's not a choice, it's not something that will "go away if you try hard enough."

It's a horrible, life-stealing, spirit-sucking, all-encompassing agony that people who DON'T suffer with it will never understand.  People who suffer from depression CAN have great days, yes.  They CAN be happy.  But when I am in the midst of a depressive episode, I can't just "snap out of it."  I can't just "cheer up."  I can't just "grin and bear it" as much as I wish I could.  As much as I will myself to just blow it off....I cannot.

My depression has been really bad lately, for many reasons.  Obviously, having a wonderful, normal, productive life and having it ripped away by a debilitating chronic illness doesn't help.  And it's been so hot that even though I may feel okay MG-wise in the house, I can't step outside because of the bizarre, record breaking heat wave.  I'm a prisoner in my own home, even when I'm not a prisoner in my own body. Talk about double whammy. 

And then there's just the stress of being chronically ill and all the BS that comes along with it.

Depression makes me want to just stop.  All my medication, all my treatments.   It makes me want to stop living, stop breathing, stop fighting so. damn. hard. for every minute.  Joyce Meyer has a book called "Battlefield of the Mind."  And that's exactly what it is: a battle.  And it's not an easy one.

Think about it:  do you know how much EASIER it would be for me to just swallow every pill in my house and call it a day? A life?  To NOT have to deal with MG and a trach and depression and pain and fibromyalgia and doctors and medications and prescriptions and fighting insurance companies for equipment I don't want to need and procedures I don't want to have?  Seriously.  Do you have ANY idea what it takes for me to make it through ONE DAY in my life???  There are days when it's all too much.

It is SO much harder to FIGHT than to just give up.

So why am I here?  Honestly, sometimes I don't know. But I know Who does.  God has obviously spared my life, because medically, scientifically, in the physical realm of life, I should not exist.  My body has gone through such turmoil and trauma that it physically should not have survived.  So how can I throw that away?

I cannot.

I am, at the core of my being, an optimist.  I love to love more than I hate to hurt.  I don't have the "give-up" gene.  It's not in my DNA.  And God knew I would need that when I was knit in my mother's womb.

Most of all, I have Hope.  I KNOW that when this life is over, I will be forever made perfect.  Physically, mentally, spiritually.  It will be as if a thick, hardened shell will be broken, and the REAL me will be allowed to come out and live eternally in physical and emotional perfection.

And no matter how long I am on this earth, compared to forever it's a drop in the bucket.  So when I am really, really down, I look into the eyes of my miracle child.

I think of the friends I have BECAUSE of this hideous illness called MG.

I think of the husband who stayed after finding out his wife might die, and finding out his wife would never be the person they both thought she would be, after only six weeks of marriage.

And I think of my God.  My Hope.  My Salvation.  My Rock.
I KNOW my Redeemer lives.

Do you?

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....

Things I Learned Today

1.  As a Type A chronically ill person, I do not like to hear, "Well, at least you tried!"  All I hear is:  "Wow, you failed big time."

2.  Swimming pools, no matter how big or small, a husband, almost six year old, squirt guns, and my trach are a disaster waiting to happen.  (Yes, I am speaking from experience; ergo, the title of this post.)

3.  I hated watching people having fun and not being able to participate when I was a kid, and I hate it even more now. 

4.  Never use a PedEgg when you're REALLY mad.

5.  MG sucks.  It never gets better.  It never doesn't suck, and it doesn't have a cure.

This Heat Must Go!!

Oh MY GOSH!!!  This heat is ridiculous.  I know it's most of the country...but good grief!  Four days of over 100 degrees???  In Michigan???  INSANE!  It's 108 right now.  Heat index is 121.  Color me flippin' HOT!!!  I haven't stepped foot outside the last 2 days.  The previous two I HAD to for appointments.  And the Best Buy debacle.  I don't have the energy for that right now, because even though I'm staying in the house, and all the window air units are going...I am SO exhausted.

So.  Short post today....I will try to get the Best Buy story on tomorrow.....You will NOT believe it!
Stay cool!!!

Where Would She Be?

Twenty five years.  A quarter of a century.  It doesn't seem possible.  That's how long it's been since my sister Michelle was killed in a car accident at 11:00 in the morning by a man whose blood alcohol was .10, over the legal limit of .08 for drunk driving.  At 11:00 in the morning.  She was meeting her friends for a late breakfast.  The car in front of her veered off the road because they saw the car that had crossed the center line.  My sister did not.

Two cars, colliding.  Two cars, containing 3 people, 3 lives, 3 sets of memories, 3 families...that would never be the same.  Two cars, traveling at least 55 miles per hour.  Impact.

My sister had gotten a hair cut one time when she was about 16 or 17. I believe now it would classify as a mullet, but back then, it was all the rage.  It was a little spiky on top.  A family friend asked her if she had become a punk rocker. (This WAS the '80's after all.)  And so from that day on, she was "Punker."  So it kind of seems odd that when I tell her story I call her Michelle.  I don't know if I ever called her Michelle in my entire life while she was alive.  It was "Micki" and then "Punker."

Of course when we were little we were inseparable.  She was 2 years and 4 months older than me, and then there were 4 years from Micki to my next sibling, my sister Lori.  Everything was "Micki and Kerri, Micki and Kerri."  Two peas in pod we were.  Until July 2, 1987.  She had graduated high school in 1986.  She would have been 19 in 2 months and 5 days.

I remember when I turned 19.  I was older than she ever was.  That was really bizarre, because she was my "older" sister.  And now it's been 25 years since I've had her in my life.

Punker was so proud of her car.  It was a light blue Camero.  She let me drive it once in a blue moon, and that car was FIERCE.  But it was not invincible.  I saw pictures of it later, and couldn't even believe all that twisted, torn metal had once been ANYTHING, let alone an awesome car.

And then I saw the passenger side.  Where her friend had been sitting.  There was a perfect almost egg shaped place where the passenger seat was where things were virtually untouched.  As if the hand of God had cupped around my sister's best friend and protected her from the violence.  She wasn't completely unscathed; she had a badly broken leg and a liver injury...but she would completely recover.  Thankfully.

My sister never knew what hit her, so the doctors say.  She was unconscious at the scene, and never woke back up.  The man who hit her died at the scene, which to me, was God's justice and mercy at the same time.  Justice because the man paid the ultimate price, (I don't even know his name, and I'm glad I don't.), and because my sister never knew pain.  Justice and mercy at the same time for my family because we didn't have to go through a trial, a pathetic sentence, or worse yet, a slap on the wrist.  We cold have sued his "estate" which would have been his family, but to what end?  It wasn't their fault.  They had lost a child, son, cousin, friend, nephew, brother...why should we hold malice in our hearts for them?

So it's been a long, long time.  I've lived the majority of my life without her.  But there are many days when I wonder, where would she be now?  Married?  Children?  Would we be best friends?  Would she live close?  Would her children and my son be inseparable like Micki and I were when we were little?  Would she have long or short hair?  What would she be doing for a living?  Would we talk everyday?  Would we....

I'll always wonder.  It will always hurt.  There will always be that place in my life...in my family's lives, in my son's life.... and yes, I'm going to say don't drink and drive.  Who knows what could happen?  Maybe this guy that killed my sister had never done it before, and didn't think he was really intoxicated.  Maybe there was still alcohol in his blood from partying the night before and he fell asleep... Maybe...

The reason doesn't matter.  I see people now texting, talking on their phones, reading newspapers, looking at magazines, picking up dropped items, all while driving.  People do NOT understand that actions have consequences.  The man that hit my sister died.  But what if he had lived?  He would have to live with what he had done for the rest of his life.

When you are behind the wheel of a car, you are basically in a 2000 pound potential murder weapon.  Drive responsibly.  Use your brain.  Don't be the cause of a family's heartbreak.  Pay attention to what you're doing.  Or you may suffer consequences of astronomical proportions.  And you will never. be. the. same.