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.