Tuesday, January 29, 2013

Life Just Keeps Going

Have you ever noticed that life has a way of just....going on, no matter what?  That there are what, billions of people on this planet, who live their lives every day, some happy, some sad, some sick, some experiencing trauma, pain, death.

And life marches along.

A mother loses her child.  The world continues to turn.

Someone loses their best friend, sister, really, to cancer.  People keep going to work, children go to school, people carry on.

A newleywed gets a diagnosis:  life-long, chronic, debilitating illness.  And life just keeps going.

Sometimes it just doesn't seem right.  It's like I want to stop people in the street and shake them and MAKE them understand the depth of my pain!  Why can't they get it?  How can they just soldier on, like drones going off to war?

I want to go to a bar and tell the person who is about to leave and drive home, bombed off his a$$ that someone like him killed my sister when I was just 16 years old.  To tell him not to make the same mistake.  Even though life would go on.

I want to go to that person who is about to jump and beg them to just hang on for one more breath.  One more minute.   One more hour.  One.  More.

And I want to scream for all the world to hear that they can't just keep going like nothing horrible is happening to so many people I love.

And yet somehow, amidst the pain and suffering, even though parts of me rebel against this constant motion of life; it's comforting.

To know that babies will still be born, and people are still doing good, and there is kindness in the world.  That God grants us new mercies every morning.  Lord knows I need them.

Although no one is promised tomorrow, somehow it soothes me to know that joy comes in the morning.  That after the darkness, the sun will rise.  I may not be able to SEE it, but I know it will always rise.

Once more.

Sunday, January 27, 2013

Mini "Vacation"

I'm not sure for whom it was a vacation, except of course, Jacob.  He got to play and swim and get spoiled just like he always does.  And Mom got to do....well....not much.

It WAS wonderful just to get out of the house, but when you're in a hotel room with your child for hours at a time, you CAN'T tell him to go to his room or whatever.  While Doug was taking classes I had to find ways to entertain Jacob.

Thursday a friend of mind from college met us at our hotel, and we went for lunch, then she came back to the hotel room and we just talked.  Jacob was pretty good while we did...he played for a while and then I think I put a show on for him.  But it knocked me right out.  I was physically and emotionally drained.

I guess what I was most disappointed with, in reality, was my ability (or lack thereof) to do things on my own without Doug.  Taking Jacob out for lunch.  Taking him by him and myself for breakfast in the hotel...He wanted to go to the pool.  I wasn't comfortable taking him because I can't dive in if something happens.

Plus I realized how hideous some other people 's children can be!  This one brat kept throwing the beach ball I just bought Jacob into the deep end, and the brats in the deep end wouldn't give it back. So I yelled at them.  Then this other brat pushed Jacob's head down under water, and then had the audacity to come out and tell his "mommy" that Jacob was "getting" him.  I pulled Jacob out of the water and asked him if he physically touched the kid (they were playing "shark" and I wasn't sure of the official rulers, ya know...)  He said no, he was just swimming after him. 

So I told brat #2 to stop touching my kid's head.  He did.  Then I had to tell brat #1 to stop throwing the ball into the deep end. I'd been down there for like 10 minutes and I was already popping a cork.   I was seriously ready to throw down with these minute punks.  They'd be sorry they messed with MY boy.

Anyway.   Needless to say, IF Doug has an opportunity like this again and IF I get to go as well, JACOB will NOT be going.  'Nuff said.

Monday, January 21, 2013

Why, Yes, Virginia, It DOES Snow Sideways!

Ah yes.  The good ol' "Lake Effect Snow Machine."  It has finally hit us.  You can see the barn on the left, but the quanset hut, in the distance, can usually be CLEARLY seen from the house.  Now it is completely obscurred by snow.

Out the front window.  Beyond the bush there behind the bird houses, SHOULD be the road.  Well, it's there, you just can't see it.

You can't see it really well, because I'm taking all these pictures through the windows, but it IS snowing sideways, and you SHOULD be able to see out road.

This is our first real snowfall we've had all year.  We had 2 inches or so about a month ago, and that's been it.  Jacob is SO excited!  So yeah, this is what it looks like on our end of the world....
How are you?

Friday, January 18, 2013

My Husband Should Be An Iron Chef

This would be crab and cilantro stuffed chicken breast and wild rice.  Mmm-hmmm.  Just an every night, run of the mill, weekday dinner.

IIIIIIIIII  KNOW!  Is he amazing or what?  I knew he could cook, and that he enjoys it, but this is above and beyond.  In fact, he used to cook for me all the time when we were engaged.  His chicken and wine recipe and twice baked potatoes....Well, that's part of why I married him! That's what I tell him anyway.

But seriously.  This man can COOK.  He could throw down with the best of them.  And I think he'd win!

I'm so blessed to have Doug...he is Daniel Boone meets MacGyver meets Bobby Flay.  I love this man!

Wednesday, January 16, 2013

Purely MG

https://www.facebook.com/purelyMG
My friend Jessica Yasin started this amazing non-profit just months after her precious little girl, Safa Leila, just 6 years old (the same age as Jacob) died from MG crisis.  This. Should. NEVER. Happen.

It's not like Safa didn't have a diagnosis.  She did.  Everyone knew she had MG.  And yet she was hospitalized, went into a crisis (respiratory failure, extreme weakness) and died.  I cannot tell you how my heart broke for her.

But instead of curl up in a ball and cry the rest of her life away (like I probably would have done), she got to work, setting up a foundation to raise money for MG Awareness.  Purely MG can be found on facebook by clicking here. 

I would LOVE it if you would go to the page and "like" it.  We want to do everything we can to raise awareness, and to raise money for MG research.  Research for a cure.

Because of my issues with the MGFA's financial actions, I was contributing 10% of all of my proceeds directly to MG patients in need.  Well, now I have the perfect place to donate to.  So, from now on, 10% of all of the proceeds from my jewelry (not just MG jewelry, all of it) will go to Purely MG.

You can check out my new site at www.kerriscreations.com.

I am still adding product, and will be for a while, but there's quite a bit to look at right now.  Thank you for your support, and thank you in advance for checking out Purely MG on facebook.

Together, we CAN find a cure.

Monday, January 14, 2013

Really? {Palm Slap to Forehead}

I know it's been a while since I posted.  For my few remaining readers, I humbly apologize.  Things have been a bit crazy.  Building a website is a wee bit more time consuming than I had originally  anticipated.

Anywho.  Here is yet another frustration of chronic illness:  dealing with incompetent staff and doctors.  Friday I get a phone call from my neurologist's office.  It was a young lady with a heavy eastern European accent of some kind.

Completely unwitting, probably-filling-in-for-someone-else-who-usually-makes-phone-calls, totally unaware, heavily accented assistant:  {Do your best Natasha from Boris and Natasha voice}

"Yes, this is {some unintelligible name} from Dr. Sullivan's office, may I speak to Kerri please."

Me:  "This is she."

Natasha:  "Yes, I'm calling to tell you that your labs are normal."

Me:  "What labs?"

Natasha:  "Your labs.  Your blood work.  It is all good."

Me:  "I haven't had any labs done for Dr. Sullivan.  Could this be from plasmapheresis?" {I have to get blood drawn every time they do pheresis because they check my ionized calcium and crit}

Natasha:  "Yes, your calcium and complete blood work, is all normal, okay?"

Me:  "Yes, I knew that.  I always get a copy of my blood work when I get it done.  What I DO need is a liver panel done because I'm on CellCept."

Natasha:  "They ran a complete blood work.  Everything is fine."

Me: {incredulous, voice dripping with disdain} "So you're telling me they ran a liver panel the last time I had pheresis done?"

Natasha:  "Yes, they did liver.  Everything is good, okay?"

I was like, "Yah, everything is NOT good, thanks for calling."

UN-believable.  I know dang well I didn't have a liver panel. What if I were not educated about my disease?  What if I were newly diagnosed and didn't know to question EVERYTHING?

So I called the nurse who generously gave me her direct line, and left her a message asking for an order for a liver panel because it's been a long time, and by the way, whoever called me has NO CLUE what they are talking about and maybe shouldn't be calling patients.

So this morning I get a call from a totally different woman (who had a brain).  She told me she had an order for a liver panel and wanted to confirm my mailing address.  She also said that there was a note from Dr. Sullivan saying that "this isn't really necessary because CellCept doesn't contribute to liver toxicity.  But I am mailing you the order."

I went through the roof.  I said, "I have a huge problem with that.  My previous neurologist was the HEAD of the neuromuscular department at the University of Michigan, and he tested my liver enzymes every 6 months.  I've been waiting for Dr. Sullivan to order a liver panel, but he never did, so I had to do it!  After my pregnancy, my liver levels were already elevated without even being ON CellCept, and I had to WAIT 3 days for them to go down before my doctor would even let me start taking CellCept again!"

And I proceeded to tell her about Clueless Natasha and her random, inaccurate prattle last Friday.

Needless to say, (yet I say it anyway) I am getting a new neurologist!  Preferably one who knows his {beep} from a hole in the ground!

Sunday, January 6, 2013

My Hubby ROCKS!

Okay, so my birthday wasn't the greatest...MOST of the day.  I didn't feel good, I had to get a chest x-ray (how fun!)...just what every girl wants for her birthday, right?  I wanted to stop at a bakery and just get a little cake for my birthday because I didn't feel like making my own birthday cake. Doug said nothing was open.  I was like, whatever.

Well.  After we got home, Doug and Jacob made me a cake.
And it was perfect.  It was super moist chocolate cake, and he used the peppermint frosting I had gotten on clearance at Christmas.  He hates peppermint. : )  He made little cake pops for himself and Jacob without the peppermint, although Jacob DOES likes the peppermint.
I mean, LOOK at that face.  (He's trying to cover up the "bite" I had taken before I got my camera!)  They were so proud. Jacob wanted to make the heart shape, and they decorated it with snowmen and snowflakes.  And the icing says "Happy" on the top left, "Birth" on the top right, and "Day" at the bottom.  Then the middle says "Love U Mom"... see the U under the heart?  I didn't see it right away, but how precious!

And for dinner, he made me home-grown sirloin steak and snowcrab legs.  He said they just jumped in the cart at the store...Snow crab is the only crab I like... And I LOVE it!  PLUS he made his famous twice-baked potatoes.

And this weekend he's been cleaning the pantry.  He knows it's been driving me crazy, but I can't move everything.  My arms give out.  It's looking AMAZING.  It's absolutely wonderful.

No one is perfect, but MY HUBBY is perfect for ME.


Saturday, January 5, 2013

Broken

I'm reposting this from June of 2009 because there have been some circumstances in my life, and in people very, very close to me that aren't so lovely...so since I needed to be reminded of this, I thought maybe you would too. 

So I'm doing this Bible study with Joanna called No Other gods. Whoa. This is not a lightweight, no sir. It is a heavy-hitter! That is, if you WANT it to be. I have found, as I'm sure many of you have, that something is only as "deep" as you want it to be...but I am going deep, because there are issues in my life that need gutting.

That said, listen to this quote from page 64 of No Other gods regarding
God's "brand of beauty:"

"A healed relationship or person can reflect more glory than one who never knew brokenness."
(emphasis mine)

Okay, I thought. Broken doesn't necessarily mean pulverized...then I looked it up in the dictionary. (Yes, I'm a "word nerd," I love doing this.) Broken: 1. NO LONGER WHOLE in two or more pieces e.g. after having been dropped or hit with something hard.

Um, yah. Have you ever dropped a glass bowl? It shatters in a million pieces! (Especially on a tile floor... not like I would know anything about that personally...) Ahem.

My favorite book (next to the Bible) is my Synonym Finder. Why they don't just call it a thesaurus I don't know. Anywho...I checked out broken, and here are some synonyms:

Shattered. Smashed. Crushed. Mangled. Pulverized. Ruptured. Torn. Damaged. Destroyed.
I will tell you a few things my friends, first of all, I'm pretty darn sure that all of us have felt one of these words in our lives...maybe recently. Maybe as recently as last week...maybe, right now.

Second, always remember that with God: "We are hard pressed on every side, but NOT crushed; perplexed, but NOT in despair, persecuted, but NOT abandoned, struck down but NOT DESTROYED." II Corinthains 4:9

Once again, the WORLD'S definition of something and GOD'S definition are completely different. The world says if you are broken, you are destroyed. GOD says, if you are broken, HIS glory will be revealed. HIS STRENGTH will be made perfect in YOUR WEAKNESS. He is making you a new creation...He loves you too much to let you grow complacent.

I am preaching to the choir here, folks. I will be the first to admit that I stumble under adversity. This last year has just been a doozy. But God knows that sometimes when I am on the mountain top, I get lost looking at the view, and not reflecting upon that which put me on the top. So He keeps giving me the "valley view" until I get it. I'm not sure that I will ever COMPLETELY get it...I mean, come on, what fun would that be? : }

Lest I digress, let's get back to the quote. Did you ever wonder what our purpose was on this earth? Very simple. To glorify God. Some people I know can do that in an amazing way without have to go down the wrong road, or without suffering. Most do not. "A healed person or relationship"....that doesn't necessarily mean physical healing, but it certainly could. How magnificent when a believer goes to the doctor, only to find that the cancer that was there IS NO MORE? That is GLORY, my friends. Much more than if that person never got cancer in the first place!

However, God can reveal His glory in the same way when we walk through the valley of the shadow of death, and do it with HIS Strength! If you knew of someone that God healed of cancer, it would be a huge WOW factor. And God would get HUGE glory. But for how long? Would we forget like the Israelites seemed to forget so quickly that God parted the Red Sea for them? But what about the person who quietly walks through their disease with God, day after day, moment after moment, constantly reflecting Him? (And I'm soooo not saying that's me, because there's not much quiet about me! I go along, but many times kicking and screaming!!) : )

Now on to a reallllly sticky subject, but one very close to my heart. Does God SEND disease? I believe, sometimes,  He does. This is one thing I know more than anything else in my being: GOD WILL DO WHATEVER IT TAKES TO BRING YOU CLOSER TO HIM.
And I mean whatever. Some things He allows to befall us, but I truly and completely believe that other things He Himself sends to us, so that we can grow closer to Him, and so that His glory will be revealed. Some of us (and I mean ME) are so stubborn we don't get the more subtle hints and need the "big guns." And when this happens, my friends, you will never be the same again.

Thursday, January 3, 2013

Being A Chronically Ill Mom

This is tough stuff.  I'm so thankful that God gave me the child He did.

Some of you may know that Doug and I had tried to use a surrogate before we tried to get pregnant.  I didn't respond to the fertility drugs, so I just assumed that because of all the medication and the MG, I couldn't have my own children.  Which I was honestly okay with.  I wanted to adopt.  I still do.  I don't want Jacob to be an only child.

When I agreed to try to get pregnant (I was terrified, mind you), I told Doug I would give him one year.  I wasn't going to be the woman trying for 5 years to get pregnant, and then be 40 and try to adopt.  He agreed that we would try for one year, and if we didn't get pregnant, we would start adoption proceedings.

Remember, I did not respond to the fertility drugs. (Which were HIDEOUS!)

In preparation for the "trying," I had to go off many of my meds, and had to go on insullin, because I was already diabetic.  They had my insulin set so high, I kept having really low-lows, and they really didn't listen to me...so I gained 20 pounds before we even started.  I had to be off my CellCept for 4 months before we could "try." 

We started in October.  I had charts and thermometers and all that stuff. I joined fertility groups and talked about things that I didn't even know existed.  (I'll just leave it at that!)  But I still thought it would take forever.

In 12 weeks, I was pregnant.

It was that time, that moment, that egg, that God knew was needed to make Jacob.  He is amazing.  He lights up my world.  He was the best baby.  The only baby I could have handled, really.  After 5 weeks in the NICU, he was finally home.   He only cried when he was tired, hungry, or needed his diaper changed.  Otherwise he just kind of hung out.  And observed everything.

And now as he grows, he is so compassionate.  It's easier to explain things to him that he can understand.  It's still really, really hard.  I want so much more for him and me.  For our relationship as mom and son.  I know we have some special bonds that other mothers and sons WON'T have, but I've always wanted to be the mom to take her child to museums and libraries and nature centers and all kinds of fun places.

But I can't do that.  MG took that from me.

But what God gave me in Jacob is so much more.  And I'm so, so thankful.

Wednesday, January 2, 2013

FINALLY!

I have been working on my own .com for what seems like months.  But in reality, it's only been a few weeks.  I'm not computer savvy, really...I mean, I can send email, check facebook, even have a blog.  But to do my own website?  SCARY!

Thankfully, with patience, perseverance, and a ton of phone calls to tech support, I am pleased to introduce you to the new and (hopefully) improved Kerri's Kreations!

www.kerriscreations.com

I only have a few items in each category, but I will continue to add items as days go by.  I'm hoping to spend a few minutes each day adding things, tweaking here and there...

I want to thank everyone who has encouraged and supported me in this endeavor.  It hasn't been the easiest thing to do for me, but nothing really good in life ever comes easy, does it?  I don't think we would value things much if we didn't have to work for them.  That's what I've learned anyway.

So please take a minute to check out the site, and let me know what you think!
Thanks....and Happy New Year!