Thursday, December 31, 2009

Attitude Check

Pardon me while I think out loud for a minute here. It's about time I list things I'm thankful for, because right now, I honestly would rather go into a corner and feel sorry for myself. My frustration level last night was about 90%...I have so much in my brain that I want to be doing. After all, my brain is still "normal." My mind is the same (well, ALMOST) as it was 15 years ago before I got sick. And it simply WILL NOT COOPERATE with my broken body. It refuses to accept, once and for all, that this illness has changed me. ALL of me.

I'm not sure how you can live with something for 15 years and not accept it. It's like every day I wake up, my brain just firing away at all of the things I want to do...and then it hits me again. "I can't" never used to be in my vocabulary; now it is necessary. I don't REALLY wish I had had MG my whole life, because I've done lots of cool things...but it's SO hard to lose something as vital as your independence.


* that God loves me whether I am able bodied or ill, and as Jacob would say, "He loves us even when we're naughty."

*that my husband has taken care of me for our entire marriage, that he has stood by me whether on the mountaintop (literally) or in the hospital bed

*that my son is healthy and smart and beautiful inside and out, that on my worst day, he can look at me with those adoring, big blue eyes and say, "I love you Mommy" and everything is right in the world again

*for friends who truly love me, who help me when I need it, and encourage me

*for pastors and laypeople who call to check on me and see how I am doing

*for my family, parents, sisters, brother, nieces and nephews, in-laws...I am blessed to have them

*for our first family vacation only 35 days away!!!

*for technology that allows me to keep in touch with people I would otherwise never talk to

*for my husband's stable job!!!

*for soldiers who willingly sacrifice everything for my freedom---God bless you and your families!

*for people who read my blog and encourage me with lovely comments! : ) (Sorry, couldn't help myself!)

God Bless everyone reading this...may 2010 be YOUR best year!

Wednesday, December 30, 2009

Warning: Bathroom Story

I felt this was quite appropriate as we are waiting for the potty training to "click".....

Warning: Bathroom Story
A 3~year~old tells all from his mother's restroom stall
By Shannon Popkin

My little guy, Cade, is quite a talker. He loves to communicate and does it quite well. He talks to people constantly, whether we're in the library, the grocery store or at a drive~thru window. People often comment on how clearly he speaks for a just~turned 3~year~old, and you never have to ask him to turn up the volume; it's always fully cranked.

There have been several embarrassing times that I've wished the meaning of his words would have been masked by a not~so~audible voice, but never have I wished this more than last week at Costco. Halfway through our shopping trip, nature called, so I took Cade with me into the restroom. If you'd been one of the ladies in the restroom that evening, this is what you would have heard coming from the second to last stall:

"Mommy, are you gonna go potty? Oh! Why are you putting toiwet paper on the potty, Mommy? Oh! You gonna sit down on da toiwet paper now? Mommy, what are you doing? Mommy, are you gonna go stinkies on the potty?"

At this point, I started mentally counting how many women had been in the restroom when I walked in. Several stalls were full. 4? 5? Maybe we could wait until they all left before I had to make my debut out of this stall and reveal my identity.

Cade continued, "Mommy, you ARE going stinkies, aren't you? Oh, dats a good girl, Mommy! Are you gonna get some candy for going stinkies on the potty? Let me see doze stinkies, Mommy! Oh, Mommy! I'm trying to see in dere. Oh, I see dem! Dat is a very good girl, Mommy. You ARE gonna get some candy!"

I heard a few faint chuckles coming from the stalls on either side of me. Where is a screaming newborn when you need one? Good grief. This was really getting embarrassing. I was definitely waiting a long time before exiting. Trying to divert him, I said, "Why don't you look in Mommy's purse and see if you can find some candy. We'll both have some.

"No, I'm trying to see doze more stinkies. Oh! Mommy!" He started to gag at this point. "Uh oh, Mommy. I fink I'm gonna frow up. Mommy, doze stinkies are making me frow up!! Dat is so gross!! As the gags became louder, so did the chuckles outside my stall. I quickly flushed the toilet in hopes of changing the subject.

I began to reason with myself: Okay, there are four other toilets. If I count four flushes, I can be reasonably assured that those who overheard this embarrassing monologue will be long gone. "Mommy! Would you get off the potty, now? I want you to be done doing stinkies! Get up! Get up!" He grunted as he tried to pull me. Now I could hear full-blown laughter. I bent down to count the feet outside my door.

"Oh, are you wooking under dere, Mommy? You wooking under da door? What were you wooking at, Mommy? You wooking at da wady's feet?" More laughter. I stood inside the locked door and tried to assess the situation. "Mommy, it's time to wash our hands, now. We have to go out now, Mommy." He started pounding on the door. "Mommy, don't you want to wash your hands? I want to go out!!"

I saw that my "wait 'em out" plan was unraveling. I sheepishly opened the door, and found, standing outside my stall, twenty to thirty ladies crowded around the stall, all smiling and starting to applaud. My first thought was complete embarrassment, then I thought, "Where's the fine print on the 'motherhood contract' where I signed away every bit of my dignity and privacy?"

But as my little boy gave me a big, cheeky grin while he rubbed bubbly soap between his chubby little hands, I thought, "I'd sign it all away again, just to be known as 'Mommy' to this little fellow."

Shannon Popkin is a freelance writer and mother of three. She lives with her family in Grand Rapids, Michigan, where she no longer uses public rest-rooms with her 3~year~old in tow.

Tuesday, December 29, 2009

The SUN and The SON

Well, well. Here we are. Christmas has once again come and gone, and many are left in the aftermath of parties and wrapping paper and cookies and gifts gone awry. Like the sunshine in Michigan in winter: you spend a loooong time preparing and expecting, and in a moment, it's over! : )
In Michigan, you have to believe that the sun is still there even when you can't see it, because otherwise you might just go crazy. Logically, rationally, we know the sun exists whether we see it every day or not. We cannot touch the sun, but we can certainly feel its effects on us, and we surely can feel the effects when we do NOT see it.
Lately there have been many seemingly purpose-less events going on in so many of my loved one's lives. My husband and son (and myself) getting a horrible stomach flu right before Christmas. Getting sick and missing my niece's wedding. A young mom dying suddenly, unexpectedly, in her own bed, leaving behind a husband and 5 young children. A man in his 30's dying suddenly in a car crash, leaving behind a wife and children. Horrible floods, one after another, in the Phillipines, wreaking havoc, devastation upon devastation to people who already have nothing. Economic collapse forcing people from their jobs and threatening their homes. My sister's beloved puppy getting horribly ill and dying the day after Christmas. Divorce. Miscarriage. Sickness. Crime. Death. It's as if this world is spinning out of control, and many who Believe are asking why.
The answer to that question is simple: we just don't know. But thank and praise God, we know the One who does! Listen, I understand loss. I understand pain and circumstance that makes your gut hurt from crying out to God begging for an answer. I understand fear and panic. I know what it's like to wonder what could possibly happen next that will cause pain to you or someone you love.
What I must remember, is that the SON still shines. When we cannot see Him, we MUST believe, and know He is there. Just as we take by faith that the sunshine is behind the clouds, we must also believe that the Son is behind the darkness. We live on a crippled and dying planet, and it seems as if evil and darkness is spreading at a maddening rate. More and more and faster and faster. If you ask me, the devil has gotten Word that his time is short, and he is trying to take as many down with him as he can.
Job is a man familiar with suffering....but he knew that no matter what, God was in control.
14 "Listen to this, Job;
stop and consider God's wonders.
15 Do you know how God controls the clouds
and makes his lightning flash?
16 Do you know how the clouds hang poised,
those wonders of him who is perfect in knowledge?

One thing I try to remember as well is that I see only my piece of the whole puzzle. My piece contains my life, my family, my friends, my world. I don't even see the next pieces, but God sees the entire puzzle, all put together as it should be. One piece absolutely effects the rest.

This was found written on a concentration camp wall: "I believe in the sun even when it is not shining; I believe in love even when I feel it not; I believe in God, even when He is silent."

I don't know how a tiny puppy suffering and dying can glorify God. I don't know how allowing a mother to leave her husband and 5 children behind is part of God's plan. But you know what? It's not for me to know. And that's okay. Why? Because,

8 "For my thoughts are not your thoughts,
neither are your ways my ways,"
declares the LORD.
9 "As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
10 As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
12 You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.

I firmly believe that God is in control, and that even when I don't know why, His ways are better than anything I can come up with. And when all is said and done, WE WILL GO OUT IN JOY AND BE LED FORTH BY PEACE!!! Please be encouraged today, that no matter where you are, no matter what has happened, God LOVES you, and He WILL provide for you and take care of you. I really felt like someone needed to hear that today. God bless you all!!!

Saturday, December 26, 2009

Alive and Kickin'

Well we all made it! We actually had a very nice Christmas, and other than being pretty tired in the morning, I felt pretty good all day! YAY!! I'm SO amazed that even THIS body healed so quickly...with all the issues I have with my immune system, it still simply amazed me how quickly my body recovered from such horrific illness. God made us fearfully and wonderfully, indeed! Oh, I was so sick. Ug. Never been that sick since I've had MG. Had to go down the stairs on my butt. Ree-DIC-ulous! I'm just super thankful I didn't end up in the hospital. three favorite gifts this year: 1. The same as every year, the gift of salvation. That Jesus would leave perfection to be born in an animal feedbox, lying in straw, among the donkeys and chickens...for ME! Unfathomable.

2. Jacob got me a locket that says #1 Mom, and there are two tiny pictures of him on the inside.

3. Doug gave me my birthday present early. You KNOW he was excited about it because he NEVER lets me open ANYTHING early, NOT EVER by HIS suggestion! So he brings out this ginormous tube. I'm like, huh? He opens it, and pulls out some rolled paper about 14 inches tall. I'm thinking, "He got me wallpaper for my birthday? He couldn't wait for me to see WALLPAPER?"

So he starts unrolling it, and it's my name...Kerri huge purple letters. (For those of you who don't know me, purple is MY color. LOVE LOVE LOVE it!) I was still like, "You got me my NAME in wallpaper??" (No, I didn't say this outloud, of course!)

Finally he's like, "It's for the boat!" So....I get a boat named after me! How cool is that? Our fishing vessel will officially become The Kerri Sue when we get to Florida. It has to be about 60 degrees to put the letters on. I thought that was one of the sweetest things ever!

Oh, AND Doug got me all kinds of fancy syrups and flavored coffees from some gourmet place in Texas. Yum yum!!!! He's so thoughtful!

Tomorrow we go to Doug's folks for Christmas now that we are all better...Jacob will be staying overnight since we will be headed to Ann Arbor Monday morning.

I hope and pray you all had a blessed Christmas!

I'd like to end with a poem a dear friend sent to me via e-mail:

If You Look For Me At Christmas
you won't need a special star--
I'm no longer JUST in Bethlehem,
I'm right there where YOU are.

You may not be aware of Me
amid the celebrations,
You'll have to look beyond the stores
and all the decorations.

But if you take a moment
from your list of things to do
And listen to your heart, you'll find
I'm waiting there for you.

YOU'RE the one I want to be with,
YOU'RE the reason that I came,
And you'll find Me in the stillness
as I'm whispering YOUR name.


Friday, December 25, 2009

Merry Christmas!

Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger." Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men on whom his favor rests." Luke 2 11:14


Well, I’m alive, but barely.

Doug got the flu last Friday. Jacob ensued about 7:30 on Sunday evening, and I was up most of the night with him, after being exhausted from taking care of Doug and Jacob while Doug was sick.

Oh, but my darling husband is having to reimburse that account 100-fold. My horror started Tuesday morning. Didn’t feel so good. Didn’t want anything to eat. By noon, I knew “it” was coming. My indescribable experience started about 1:00 on Thursday, and I called Doug at work so he could come home. I don’t remember anything but agony for the next, oh, 18 hours. At one point, I vaguely remember propping myself up on my walker, while on the throne, holding a bowl…it was pretty horrifying.

At one point, Doug said I was in there for about 2 hours. I must have been in and out of consciousness….or at least reality!!

Anywho…that’s one way to lose 6.5 pounds in 2 days!

We were supposed to go to Doug’s parents today for Christmas…not happening. I had to sit down on the steps on the way down this afternoon. I’m trying to get up a little more, because I’ll never get stronger if I don’t start moving around a bit and trying to eat.
SO….please pray for recovery at this point…more later.

Monday, December 21, 2009

More sickies

Well, we know it's not something Doug ate.

Jacob started throwing up at about 7:30 PM and kept it up til about 3 AM. He seems to be just fine now, for which I am very thankful....he's acting pretty much like himself, and says he's glad his tummy doesn't hurt anymore. : ) Me, too, bud. At nearly 3 1/2, this was his FIRST stomach flu. He's never really thrown up before (other than spitting up as a baby), so he was terrified. Mommy wasn't so good either.

Every time something like this happens, where you see your child hurting in some way, I am brought to a newer, better understanding of God's love for us, His children. Seeing Jacob like that absolutely broke. my. heart. And my love for him isn't pure and perfect like our heavenly Father's love for us...really makes you stop and think....

So, I am asking that if you read this, and if you pray, PLEASE send up a prayer on my behalf. Because of the myasthenia, ANY illness can be very serious, and lead to complications...I'm already a bit weakened from being up all night with Jacob...I certainly don't want to end up in the hospital for Christmas.

Doug is feeling mostly back to himself...ate his first real meal last night...I'm just super exhausted from taking care of both Doug and Jacob...

So thank you from the bottom of my heart for your prayers...I believe God hears them and will answer them...

God Bless You!!

Saturday, December 19, 2009

Illness Strikes

Blah. We would so appreciate your prayers! Doug is sick...up during the night, and today is achy and has a slight temperature. I don't think it's the BAD flu, because his temp is just 100....I would think it would be higher if it was serious flu. I'm still hoping it's something he ate! I'm hosing everything down with antibacterial stuff....and PRAYING that neither Jacob or I get it. I was super exhausted yesterday, bad eyes...I was looking forward to having Doug's help today. Oh the joy of complication.

I was supposed to start book reviewing on Friday (I admit I stole the button from someone else's site, but they said I could....) but anywho. I will try next Friday, if the world has ended yet. I know, I know.....stop the llama drama! : )

Friday, December 18, 2009

Up Down Up Down Up Down

Good grief.

Wednesday night was SO fun...and yesterday was awful. I was on the verge of tears all day. I had to go to my hubby's work Christmas party, and asked him to come and pick us up (which is what he usually does). It's very difficult and exhausting to take Jacob anywhere on my own. Besides the fact that I can't tighten the straps on his carseat as tight as they should be. I just don't have the grip or arm strength. It gets pretty snug, but not as tight as it probably should be.

So he is super-stressed at work. They are nearing the end of a 10+ million dollar expansion, and doing start-ups this week. It's just a pain in the butt. (Not to mention that something started on fire as he was leaving).

At supper last night I said to him, "So work is really stressing you out, huh?" And he's like, "It's not so much work as it is stuff like today...having to come and get you and Jacob. I should have just asked you to take the car." OUCH. (I ended up taking Jacob home by myself because when he came home to get us, he took the truck). I just lost it. He was like, "What's up?"

I told him I haven't been telling him how I feel because I know he's stressed and I didn't want to add to the mix...but that I feel like I'm sick when it's convenient for when he doesn't want me to go anywhere, or do anything. But when it INconveniences him (messy house, having to pick me up, etc.) then I'm fine to do whatever. I FINALLY got it out. I've been feeling that way for MONTHS.

PLUS, even though I felt lik sh!#, I tried really hard to look nice, wore a new necklace and earrings, a pretty black and purple shirt (no, not my new one, Joanna!). I put on some black shoes. They looked really cute. However, I KNEW I wouldn't be able to walk well enough because of my balance, so I got my cane. THAT'S when Doug called to say I would have to drive home. So...I changed my shoes so I could walk better. Stupid clunky sh!#-kicking shoes. Nice.

Did Doug tell me I looked good? Nope. Did he even notice? Nope.

I know part of that is just a man thing, but I feel like I'm so alone in this house with this disease, and I told him as much. (For any of you who know or see my husband and read this blog, please don't say anything to him...) He's (and to some extent I have) fallen into the trap of "Oh, we're married now, I don't need to be as nice and sweet as I did when we were dating or first married. And when I have a couple of good days, it's like he forgets my limitations.

Don't get me wrong, I wouldn't trade my husband for anyone in the world. This man slept on the couch for SIX MONTHS while I was in a hospital bed in our living room when I first got out of the hospital. He had to suction my trach several times a night. He still worked full time, took care of me full time (someone came to stay with me during the day while he was at work). He is a hard worker and wonderful provider. He is super smart and ingenious and clever. I know he loves me and I trust him with my very life. He is faithful and a Christian...He is my earthly ROCK. (But as you know, rocks aren't very sensitive!) Sorry, couldn't resist.

It felt good to get it all out, and we'll just see what happens from now on. Probably the same thingf that always happens. Things change for 10 minutes until something else comes along. {Sigh}

It's been a crappy couple of weeks with the trach. I'm going to have to make an appointment to see the ENT in January...I may just need a new trach. The one I have is a year old. Maybe that's the problem. I keep tripping over the stupid dogs, and wrenching my hips. It just gets old being able to name what's RIGHT about you more quickly than what's wrong.

Oh, and to top it all off I took the Dr. Oz "Real Age" test. I'm 52. Nice. Well, sometimes I feel like 90, so I guess that's not TOO bad!!

Thursday, December 17, 2009

Girls Night Out

Last night Joanna and I had our Bible study Christmas party. Well, that's our story and we're sticking to it! : ) We went out for dinner to Applebee's and then shopping at Fashion Bug and WallyWorld. Yah. I know...hugely exciting. We had fun though. Til I called my husband and got chastised for shopping.

It just felt so good to be out with a girlfriend, hanging out, feeling almost normal after all of the BS we have BOTH been through. I got an awesome purse (with purple silky lining), an AMAZING sparkly black and purple shirt with purple pants, and a pair of black pants with this lacey kind of leopard print thingy (tasteful animal print)...and Joanna and I got matching necklace and earring sets because 1. they were on sale and 2. due to our love of all things purple, and 3. we're best girlfriends and love the same things! Lovely!

At Wally world I got a bunch of kitchen stuff for Doug for Christmas yet. And of course mac mac cheese for Jacob. : )

I will let Joanna tell you about the dog screaming neighbor at Applebees!!!

Wednesday, December 16, 2009

Random Blather

I just noticed that I'm at like 235 posts. I must have missed 200. I'll have to do some big ta-da for my 250th or something. Maybe I'll do a give-away! All 6 of you who read my blog would have a really good shot at winning!! : ) Methinks I shall have to put a plan in motion...stay tuned.

Good news: my eyes seem to be behaving. I'm running around like a crazy woman today though, so we'll have to see how long they hold up. Had to stuff the Christmas cards with our picture (yes, the WRONG ONE), find a few addresses, do Jacob's laundry, plate up 5 cookie trays for Doug's work peeps (that totalled ten dozen cookies right there!), fold three loads of laundry, keep Jacob from killing the dogs, keep Moose from killing my Christmas tree, keep myself from killing Moose, wash my hair, have to get ready yet...going out with my best "g" Joanna tonight...dinner and shopping. Woot! Woot! We need a little happy time. (Even though it's just Applebee's and Wal-Mart!) He he he. I think I had too much coffee or something. I'm a bit spastic.

Doug's a bit irritated because I bid on some auction items and WON them...and he has to go to Kalamazoo to pick them up. Nevermind two of them are for him!....the lawnchair with a toilet seat is mine...I will NOT go on the ground, or, God forbid, an outhouse. So, if we go camping, (No comment from the peanut gallery!) I will have a throne. Of sorts. I guess I'll just have to put it at the top of a hill. (They have awesome auctions on there are some Coach purses. I haven't dared look at what they're going for. )

Anyway....just jotting off a note before I continue my mad dash to have Jacob ready at 3:30 and me ready by 4:15. Oh, and yesterday was Ann Arbor, can you believe it? Treatment went poke in each arm, NO problems, no veins collapsing, NO pain...and I ran reaaallly fast. SWEET!!

Ya'll have a good one!

Monday, December 14, 2009

What a weekend.

Busy busy busy. Exhaustion. Pain. Stress. Ug. Can't even describe. Eyes are a BIT better---Halleljuah for that!

Saturday we went to Costco. Again, this is a love/hate relationship for me. I LOVE LOVE LOVE Costco. The problem is, I love it toooo much. Ergo the hate part. My checkbook hates it. Thank God you can't use credit cards there, or I'd be in the poorhouse all from Costco purchases. They have EVERYTHING! I swear they pump the air full of some kind of pheromone that makes you NEED to buy things....

I ALWAYS use the Costco photo department. Well, Saturday there was a new guy there. I had a coupon for 50 free prints...perfect! That's about what I needed for my Christmas pictures to send out with cards. Awesome! Well, AFTER we got home, I realized that he didn't take the coupon off. I gave it to him, and I saw him writing on it, but he didn't use it!! Now I have to call them. UG. I had several other pictures to get (surprise, surprise, I know!) so I didn't really pay attention. Mistake number one. Mistake number two: I selected 50 of the WRONG pose from our Christmas pics. It's an okay picture, but it's not as nice as the one I wanted, and I am IRRITATED. That's what happens when you're too freakin' tired to know your own name.

Then my sister and her family came over for supper, and I made (from scratch thank you very much) chicken and dumplings, which, if I do say so myself, were amazing. I made two 9 x 13 pans, and it was ALL scarfed up. DANG!

So after that day, I was freakin' pooped. I fell asleep watching TV. That NEVER happens. It was so nice to just hang out with my sister though....she got me THE coolest earrings...she works at a retail clothing store, and gets a decent discount, plus they were on sale...anywho...they're long and delicate and have purple beads. Purple, is, of course, THE best color on the planet.

Sunday, after that marathon Saturday, I actually made it to church! WHo--hoooo!!! That's like twice in 4 weeks! Ended up bawling my eyes out to a very kind elder over a friend of mine who is hurting very badly, and having all kinds of problems...being attacked by the stupid devil like there's no end in sight. Asking for prayer for them...the guy grabs like 4 different people who are heads of this ministry and that ministry, the prayer leader, etc., and this friend has been there TWICE...and I've only been there like 5 times. This church (The River in Allegan) is AMAZING. This is the one that has the pastor that I've known since I was 8...he is a counselor there now. And the church consists of probably 100-150 people. It's not like it's some huge mega-church.

They were swearing in elders was just a cool place to be. I must have talked to these folks for an hour...Keith, Shelly, Ann, Gwen, and Kathy...THANK YOU. They all committed to praying for my friend and her family. It was just so neat to see all these people IMMEDIATELY want to help and step in. What a living, breathing picture of Christ in action.

And to my friend, who knows who she is: God is bigger than all this. He WILL see that all this works for your GOOD. I do not know how. But I know that I know, that I know that I KNOW He loves you and is GOING to help you through this. I love you so much, and I would do anything to help you....but I am so helpless. I can and will continue to lift you to our MIGHTY GOD, Who parted the Red Sea, who rose Christ from the dead....He IS ABLE to do immeasurable more than ALL we ask or imagine...I am claiming victory for you through the blood of Jesus!
If you need ANYTHING, call me day or night. I love you!!

Friday, December 11, 2009

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 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!!

Wednesday, December 9, 2009

Christmas Cookie Swap

Kara is having a Christmas cookie swap!! It starts at 4:00 PM ( 7:00PM EST) today.

You can click the button on my sidebar to get there.

Here is the EASIEST Christmas cut out cookie recipe ever. My husband has been making these for years before we got married, and we make them every year.


1 cup butter or margarine, softened (I actually use 1 stick of each)

1 cup sugar

1 large egg

1 tsp vanilla

2 tsp baking powder

3 cups flour

Preheat oven to 400. In a large bowl, combine butter and sugar with an electric mixer. Beat in egg and vanilla. Add baking powder and flour one cup at a time, mixing after each addition. The dough will be very stiff; does NOT need to chill.

Roll out on floured board for cutouts. Bake for 6-7 minutes.

I use canned frosting to frost them, or just sprinkle colored sugar on them BEFORE you bake them. They're super easy and super yummy!

Support out Troops

I just got this link off of another blog from a SITStah-....

You can get an address of a contact person for a unit, or an individual, to send care packages, letters, whatever. Stuff like drink powders (koolaid, crystal light), energy drinks, phone cards. Each one listed (there's like 2000) has info about them, where they are from, etc. You give them YOUR info, and then they send you the address. It's an awesome way to show your support for our guys and gals overseas, serving our country. I don't know if a package would get there in time for Christmas, but I don't think they would mind if it was a bit late.

Even if you just write letters, letting them know you are supporting them (even if you don't support WAR, you can support our armed servicemen and women), and praying for them.


Tuesday, December 8, 2009

The True Meaning of Christmas to Me...Hope


So much power in such small word. I have always been an eternal optimist. Always seen the glass as half full, filled with the best thing you could ever want, and expecting it to be completely full soon. After being afflicted with a chronic, debilitating illness, that glass shattered. Some friends and I were talking about this glass-half-full business a while back, and the eternal pessimist said, "Glass? What glass?" Well, that's about where I was.

But thank GOD He didn't leave me there. I can't STAND the thought of no hope. It's not that I see the world through rose-colored glasses, because trust me, I do not. But ponder this:

"Sanity may be madness but the maddest of all is to see life as it is and not as it should be."
-Don Quixote

I may not be healthy right now, but I hope that someday I will be here on earth. I KNOW I will be in heaven. It's choosing to believe the good. Yes, you may be disappointed. But living life, just accepting where you are, to "see life as it is instead of as it should be..." That is so powerful! Think about how different things would be if everyone TRULY started living as they SHOULD. Every moment of every day. Impossible? I don't think so.

Jesus was born so that we can have that hope. Christmas to me, is so NOT commercial. We don't talk about Santa Claus, (I know, how controversial!), we celebration Jesus' birthday. If He never came, there would be no HOPE. And I'm not sure I could live my life like that. I should never have been able to have this precious child, Jacob...but Hope prevailed, and God blessed me so much!

"Hope is like a road in the country; there never was a road, but when many people walk on it, the road comes into existence." -Lin Yutang

I know life can hurt. I know life can be unfair...believe me, I know. But I also know that HOPE is more powerful than unfairness. It is bigger than fear. It is stronger than despair.
It is the infertile woman knowing she will someday be a mother. It is the sick among us knowing that someday they will be well. It is the "poor" among us who know they are really, immeasurably blessed.

Hope lives. You can take a lot from a person, but as long as they have hope, they will go on.
This Christmas, try living life as it should be, not as is it. See where it takes you.
Always remember the Reason for the Season.
Merry Christmas,
and Merry SITS-mas sisters!

Monday, December 7, 2009

Humble Bunny

I've had this bunny for almost 20 years. I named him Humble Bunny.

I had been student teaching in rural Indiana in the fall of 1993. These were country kids, to the core. I was still (mostly) a city girl, with an appreciation for the finer things in life.

On my last day, many of the kids gave me presents. It was SO precious to see these children giving from the heart! One boy got in line and gave me a matchbox car, because he had one in his desk and desperately wanted to give me something.

Another boy, Andrew, was from a well-off family. Always clean cut, well dressed, combed hair, etc. Andrew was a straight A student, always attentive and well behaved. He was the exception rather than the rule. He was in line right ahead of Bobby, who lived with his grandma. His hair was sometimes messy, his clothes at times unkepmt. Bobby would struggle to grab some concepts, and his attention would occasionally drift. But as you will soon see, he had a heart of gold.

Andrew gave me a gift, fancily wrapped with beautiful ribbon. I commented on how lovely it was. I opened the box, and here is this hand made, bright white thing with hand sewn peach ribbons and flowers. I didn't know what it was. You grab the strings and hold it up and it makes these little pouches. A sock holder maybe? I still have it, and I still don't know what it is! I went on and on about this gloriously clean, glowing, crisp white linen and flowery peach gift. Andrew was pleased.

Then Bobby hands me his gift. I'm about to bawl just remembering this moment. Bobby, a little dirt on his face, a few wrinkles in his clothes, and his hair smoothed down as much as possible, handed me this little, filthy, purple bunny. My mind was racing. This child had just given me something of obvious import to him, and it was filthy. I mean nasty filthy. I had just practically swooned over Andrew's gift, and now this.

I looked Bobby straight in the eye and said, "Oh, Bobby! How did you know? Purple is my favorite color!" (Which is totally true!) I gave him a hug, and he beamed from ear to ear. I had tears in my eyes as I went down the line, thinking about the sacrifice that this little boy had made, because he wanted to give me a gift.

As Christmas approaches, I can't help but think of another who made the ultimate sacrifice to give me a gift as well. Jesus left heaven above, a perfect, clean, glowing place, and came down to this mud ball called earth. To the dirt and decay and horror of human-ness. He died a brutal death so that you and I could live in that perfect glowing place called heaven.

To Andrew, it was no big deal to give me that gift, since his mother made it, wrapped it, and handed it off to him. It's in a drawer somewhere. But that bunny. My humble bunny...I keep it displayed wherever I live. It reminds me every single day of how to live my life.

Saturday, December 5, 2009

In Memory of Linda, on her birthday

Today would have been my best friend Linda's 42nd birthday. Instead of celebrating here on earth, however, she is rejoicing in heaven, and probably having one heck of a party! Linda was diagnosed with Stage 4 metastatic endometrial cancer on November 1, 2007. She had her first chemo treatment on her 40th birthday.

You can read her story here.

Linda died on October 2, 2008, 11 months and 1 day after her diagnosis. She was in hospice for only a few days. She WORKED up until about 3 months before she died. Linda was almost as bullheaded as me! Well, maybe even MORE so...I just ache with how much I miss her.

Linda was the kind of friend you get the privilege of knowing once in a lifetime. She was the kindest, most compassionate, most loyal, faithful friend anyone could ask for. She was beautiful inside and out. I always told her that God gave me her as kind of a big sister (although she ALWAYS told people she was younger than me, that stinker!)...My older sister, almost exactly Linda's age, was killed in a car accident when I was 16. She was 18. I didn't meet Linda until my early 20's, but we became fast friends. Linda didn't make friends very quickly, but when she did, you were a friend for life. Who knew that "life" would be such a short time?

While Linda could never replace my sister, God filled that void with Linda. And then when Linda passed, He gave me another wonderful friend in Joanna. Again, never replacing, just God's provision. (Love ya girl).

Before Linda died, while we were both trying to be very optimistic, we knew. And so we didn't waste time. I told her everything she meant to me. She did the same. In the 12 years that we were best friends, we had one stupid fight. One. We walked down memory lane, a lot. PLEASE do that with your friends and family NOW. Don't wait until one of you is on death's door to remember the good times.

If I could say anything to Linda, it would be how much I miss her. It's like learning to walk again with a prosthesis instead of your real leg. Or like losing part of you, and not quite knowing how to fix it...until you realize there is no fix. I will forever be changed by her death, but more importantly by her life. There is a part of my heart that will never be mended completely.

I still think, "O my GOSH I HAVE to call Linda!" when I see something scandalous on a show we both watched. I can't watch Rachael Ray because it's simply too painful. Linda got me hooked, and if I watch, I almost get angry that something so important to her can just go on like nothing ever happened. I don't know if that makes any sense at all.

I don't think a day goes by that I don't think of her. I still hurt. I still get angry. I still wonder why her. I want her back, but I know that she is so much better off. She is whole and happy and perfect, and will never feel pain again.

I love you Linda...I miss you so, so much. I know I will see you again someday, but in the meantime, it still just hurts. I can't wait til we can get all caught up again!!
Happy Birthday my sweet, sweet friend.

Friday, December 4, 2009


No happy post from me today folks. Sometimes life is just crappy and unfair. Missing my niece's wedding. I feel like garbage, Doug is sick too now, and to add to the loveliness I dropped an 8 pounds can of peanut butter on my foot this morning.

I haven't even met my new nephew (Jessie's husband Daniel), and Jacob was supposed to be the ring bearer. Pi$$ed doesn't even begin to cover it.

Thursday, December 3, 2009

Reality Bites

So this is what I get for trying to live a normal life. I feel like poo. Roadkill. Just plain yucky. Headache, a little bit of a sore throat, slight fever, chest congestion, cough. I've felt WORSE.... But I've also felt better, for sure.

Tomorrow is my niece's wedding, and Jacob is the ring we could REALLY use some prayers!! For me that this is just a TINY big or NOTHING but over-doing it, and that I"ll be fine for the wedding romorrow, and for JACOB, that he will be a big boy and walk down the aisle WEARING his little tuxedo. We are missing the rehearsal tonight, so......PRAY! : )


Wednesday, December 2, 2009


Well, I have been requested to post some pics of my hubby's handiwork...Although I WILL take credit for all the straight, beautifully organized shelves... : ) He did all the hard stuff, as far as building, and I put everything where it was supposed to go...This big ol shelf Doug made a few years ago. It's in the kitchen, and used to hold all of our homemade canned goods.

This shelf has all my baking supplies and cook books, hot cocoa (Doug),coffee and tea.
Now on to the pantry....I can't explain how, but my husband used the legs from only 2 shelves, but the shelves from all 3 shelving units. The pantry was like 3 inches short, so he pulls a Frankenstein on the shelves, and viola...we exchanged a cube freezer for a chest freezer, and he still got everything to fit.

We took Every. Bloomin'. Thing. out of that pantry, and cleaned everything and put it all back in...but now it's SO purdy! I'm in OCD heaven. I can walk in and see everything we have...

OH, and before anyone calls the hoarding show....let's just say we're PREPARED. (for nuclear holocaust!) : ) But serioulsy...we do stock up when things are on sale, but the biggest problem before was not being able to find anything, so we bought whatever we thought we needed. Then, of course, while redoing all of this, we found the original (s). How else do you end up with 3 jars of honey and 3 boxes of corn starch??

The final project was the entertainment center. This used to have a huge hole in the middle for a 32" TV with the huge back end. (As opposed to the svelte LCD TV's now...)

You would never know that now! The new TV sits on top, and the stereo and new DVD player sit where the old TV used to be. Amazing. Told you I married McGuyver!!

Pretty slick! But I'm glad it's all DONE!!! Lots of work. I haven't completely recovered yet! But when I walk into my lovely kitchen, or perfect pantry...It's allll been worth it!!

Monday, November 30, 2009

What a Whirlwind!

My GOODNESS! The last four days have been INSANE. Thursday, Thanksgiving, was spent at my parent's house, with my family, and then we dropped Jacob off at Doug's parents for an overnight. Doug and I plugged in our ginormous TV, sat on the couch (actually NEXT TO each other!) and watched a movie. It was awesome. Then Friday morning we got up (as Joanna would say) at the butt-crack of dawn (hehehhe) and went shopping all day. Back to Wayland to pick Jacob up. Unpacked. Oy. Then Doug started messing with the pantry shelves. I should seriously take pictures...(Ashley, it's like a MONK pantry now!!!!)

Saturday, we finished the pantry. I mean, we took every. single. item. out and cleaned, put it back (or on my other gigantic shelf in the kitchen where I put all my baking items, candy making items, tea, coffee, and hot cocoa (for Doug). Everything is all lined up...all the labels the same's a sheer work of art. Brings a tear to my eye. Anyone with even slight OCD is welling up with pride. The ONLY way it cold be better if it would be alphabetized...However, taking out a million cans and boxes and putting them all back in (90% by myself because Doug was hacking up the entertainment center to reinvent it to fit the new TV). Again, McGuyver pulled out a miracle. I can't even describe it. Have to do pics again.

THEN, Sunday morning we were cleaning frantically because the house was completely trashed from the activity of the previous 3 days. Doug's parents came over for Thanksgiving yesterday, and we had our one turkey who survived to be butchered. I know, oxymoron. It was too big to fit in the roaster (22.5 pounds!) so he had to put it in a foil pan with a ton of foil over it. Hilarious. That thing could have fed a village. We'll be having turkey for a looooooong time. If you have any good leftover turkey recipes, let me know!

Today I'm exhausted! I woke up this morning feeling like I had been hit my a Mack truck. It's getting a little better, but I'm taking it EASY today...and having pizza tonight with great friends that we haven't seen in forever!

Hope everyone has a great Monday!

OH----thank you to my Symlin, I have lost 10.5 pounds! Even over Thanksgiving and surviving making about 20 dozen Christmas cookies! Woot! Woot!!

Saturday, November 28, 2009

I Survived my First Black Friday!

Oh my gosh what a bunch of crazies there are in the world. And no, I'm not JUST noticing this, but who in their right mind gets up at 4:45 AM (that would be me) to go to town to shop? We just went in town first, but Pamida opened at 6 AM, and they had a 32" TV my in-laws wanted as their TV was completely dead. Good thing we got there when we did, because they only had 4 of them, and we got the last coupon.

I have to say, Pamida did something very smart. The had an employee outside going down the line to ask what people were there for. They had printed slips of paper with the "hot ticket" items on them. And we got the last TV ticket. And we were only like 12th in line. But that eliminates the "I'm-gonna-get-there-first-and-don't-care-if-I-trample-you." problem. What a sad state of affairs that was last year. That people would care so much for saving $50.00 that that would trample a human being. I really can't fathom that. I truly can't. NOTHING is worth that.

The only other place we had to wait in line was Radio Shack in Otsego because they didn't open til 9. The one in town opened at 5:30, but never even HAD what we wanted (a wireless keyboard for my laptop). So we ended up going to Otsego, and getting everything on our lists! It was very cool. We got a TON of DVD's from Meijer and WalMart. We saved a BOATLOAD of money. It was pretty fun actually! Doug's parents took Jacob overnight so we didn't have to worry about him getting all germy and cranky, not to mention dragging him out in the middle of the night. I can't IMAGINE doing that. And Jacob just LOVES going over there.

Our BIG splurge was a ginormous TV. And I mean GINORMOUS. I feel like I'm at the movies now in my own house. Wierd. And the pictuure is SO clear!! It's like 3-D...wierd. (Yes, I'm technologically impaired.) Our old TV was on the fritz, and with winter coming, I was not about to be without a TV...soI guess it was a good time for both our and my in-laws' TV's to die! YOU normally go out the day after Thanksgiving? Where do you go? DO you always go with the same people? Would you sit out in line like overnight?

I would NOT sit out overnight for anything. There is no material ANYTHING that I would wait in line for more than like, 30 minutes for. And THAT's pushing it. : )

Hope you all had a blessed Thanksgiving.

Thursday, November 26, 2009

Happy Thanksgiving

I grew up in a very staunch Christian Reformed church. We sang hymns. ONLY hymns. And, unfortunately, we sang them as if we were dying. The slower the better, oh, and especially if you sang it in a minor key. Now that I'm older (ish!) and have sung praise and worship for years, I look back on some classic hymns with new appreciation. This one says it all:

Now Thank We All Our God

Text: Martin Rinkart; Trans. by Catherine Winkworth
Music: Johann Cruger; Harm. by Felix Mendelssohn

Now thank we all our God, with heart and hands and voices,
who wondrous things has done, in whom this world rejoices;
who from our mothers' arms has blessed us on our way
with countless gifts of love, and still is ours today

O may this bounteous God through all our life be near us,
with ever joyful hearts and blessed peace to cheer us;
and keep us still in grace, and guide us when perplexed;
and free us from all ills, in this world and the next.

All praise and thanks to God the Father now be given;
the Son, and him who reigns with them in highest heaven;
the one eternal God, whom earth and heaven adore;
for thus it was, is now, and shall be evermore.

Praise God today for all that we have to be thankful for. Enjoy your day!

Wednesday, November 25, 2009

Giving Thanks

Oh, we truly have so much to be thankful for. Even in the worst of times, we can find gratitude. Think of Corrie ten Boom. Joni Erickson Tada. Do you think they had reasons to be ungrateful? I sure do. But they aren't. They bless God. And they share with others His love and grace.

Joni has become a true inspiration to be since I have been ill. I've known her story, and was always amazed at her fortitude, but since being diagnosed with myasthenia gravis, spending so much time in the hospital, the physical, mental and emotional challenges that it brought forth.... I have really looked at her and thought: "This woman has to wait in bed in the morning for someone to come and get her up. To help her with the bathroom stuff and bathe her and dress her. What the HECK are you complaining about?" So I'm going to list some things for which I am thankful...and I would LOVE for you to leave a comment telling me one thing YOU are thankful for. What has blessed you this year??

1. I am thankful to my Almighty God, Who Was, and Is, and Is To Come.

2. I am thankful that the God who created the Universe and stopped the Red Sea, who parted the Jordan River during flood stage...that He is HUGE enough for all that, yet still chooses to live in my heart.

3. I'm thankful for my family....for my wonderful, amazing husband who is such a good provider for our family. You are my very best friend, and I love you forever! You are such a hard worker, a dedicated husband, and awesome Daddy. Jacob has been so excited to share in some of Daddy's deer hunting adventures! And for Jacob, my precious gift. I never knew such love and joy until I saw that little face...big ol cheeks and black curly hair (I know, you'd never know it now!) Mommy is so proud that you are MINE!!!

4. I am thankful for good friends who are so willing to help me when I'm having a bad time. Kathy, my cleaning angel....Shawn, for setting everything up, for helping me with Jacob...Candy for putting in more than her "scheduled" time...Leigh and so many others who pray for me...and for Joanna, my dear, dear friend, who has become like a sister to me. I cherish our Bible study and the other times that we get together. You bless me. Thank you for being there 24/7 no matter what. I lurv ya!

5. I am thankful that I have a disease that is not degenerative or terminal. There is no cure, and there certainly ups and downs, but there are far worse diseases out there.

6. I am thankful for this computer, for this blog, which has allowed me to meet some amazing, godly friends. You make me laugh, you make me cry...some of you make me spit out my coffee or pee my pants, but you're still awesome.

7. I'm ever thankful that I can see and hear. I can walk, I can talk (most of the time)... : )

8. I am so so so thankful that my husband has a good, steady, stable job. And that we have insurance. It may not be perfect, but it's soooo much better than many have right now. I am so thankful for all God provides in that area!

9. I am thankful for my parents and siblings. No matter what happens, we are family, and we will always be there for each other. I am thankful that my brother Mike FINALLY got into his house in California! Apparently, if you ever hear the words "short sale" in real estate, even if it's an unbelievable deal, cover your ears and run far away as fast as you can.

10. I'm thankful for my home, for heat in the winter and cool in the summer. I'm thankful for the food in our pantry and the clothes in our closets. AND I'M THANKFUL FOR MY NEW MED SYMLIN!!!!

God Bless you all this Thanksgiving....please leave a comment and share what YOU are thankful for!

Tuesday, November 24, 2009

Ring Bearer Jacob

Ah yes, the joy of penguin suits. Jacob is in my niece's wedding next week, and we just got his tux yesterday. Tried it on him....the top fits perfectly...the pants...not so much. And as you can see, he just LOVES it. Um, yah. can all start praying now that he'll wear it! Apparently it's better after the bowtie is off, because at least he quit screaming!

Time will tell....

Monday, November 23, 2009

Oh, Is It Monday! Randomness

My goodness. How can you use a cappucino machine every day for over a year, and then one morning get up, forget to put the metal filter in, wonder why the coffee is streaming out from all over with grounds in it...flip the thing over, mess with the seal, burning yourself on the heating element, (thankfully not REALLY breaking it) before seeing the little metal filter thingy that is supposed to go in the cup thingy. Ug. So half an hour later, I finally get my coffee. What a terrific way to start out the morning {she said, in a voice dripping with disdain.}

Then Jacob wants a train off the train wrapping paper I brought downstairs. He's obsessed with trains right now. So I painstakingly cut out a train (1 engine with two cars),and glue it on a iece on construction paper to it's more sturdy. What does he say? Mommy, can I have another one?
No. Mommy, it needs another car on the end. No, it doesn't. Yes it does!! NO.
So I'm like, what do you want for breakfast? No response. I name a couple of things. Nothing. I ask again. What do you want for breakfast? To which Jacob replies, "A train??" Ug. (And this was even BEFORE the coffee!)
Then I'm on facebook, and can't see any old posts. No big deal, just ANNOYING!!!
Oh, and one more thing to add to my annoyances of things that should all be the same wherever you go: public restroom doors. K. When you go IN, you should PULL the door open. (I hope all you major stores and restaurants are paying close attention here!!) Your hands are probably already dirty, even if they aren't, you're going to the BATHROOM. Hello!! SO....then you wash your hands....(with SOAP kids!) and dry them with PAPER TOWEL (since air dryers are breeding grounds for all things bacterial), using the paper towel to then turn off the water.

THEN, if everything was right with the world, you would PUSH the door open, using your elbow, foot, hip, tush, whatever! Clean hands need not touch the door! DUH. It does NOT take a rocket scientist people. But no, most doors you have to PULL open, thus contaminating your hands again because you KNOW everyone does NOT wash their hands after they use the bathroom.
Pardon me while I go vomit a moment.

Okay. SO...if you HAVE to pull the handle, use your paper towel, and then throw it away. If the bathroom doesn't have towel available, use your shirt to jerk the door open a little, enough to get your foot in there and kick it open. (Yes I've studied this thoroughly.)
Anywho. This post is certainly all over the place. Why not add a few more. There is a woman named Grace Datema who is having brain surgery today. She has 6 children. Please pray for her today, that the surgery us successful and that she will not have any complications, and will heal quickly.

Got to go to church yesterday....WHOO HOOO!!!! Awesome.

Finally, here is my little hunter. He has been waiting for MONTHS to hunt with Daddy. (Yes, the gun is fake!)...he was practicing all morning, shooting "deers" out the windows, and then bringing them in for Mommy to pet.

That's my baby!!! What a serious little man!

Saturday, November 21, 2009

Cursed Disease

I think the most brutal thing about this disease is looking into the expectant, "you-can-do-anything-Mommy" eyes of my baby boy and saying, "Not right now, honey. Mommy doesn't feel good." He's still just a little young to completely understand. I try to explain...

Jacob: Can you read to me while I eat Mommy? (As I'm giving my self my Symlin shot, changing my insulin pump)...

Me: Not right now buddy...Mommy has to take care of a few things. Mommy's not feeling so good today, so we have to take it easy today, okay?

Jacob: Why, Mommy?

Me: Well, you know how Mommy has to take lots of medicine, and vitamins? {Jacob nods} and how Mommy has a trach? {nodding again} Well, Mommy isn't like all the other Mommy's. I have something that's inside her that's always there... something that makes her not feel good sometimes.

Jacob: "But I need you to be good Mommy!"

Me: {can you hear the sound of my heart breaking?} Well, honey, I do too. But we have to wait until God decides it's time to make it go away.

Jacob: Can you read to me now?

The logical, rational side of me (yes, it's may be small, but it's there!) thinks, okay, just read, move on, put the TV on, and he'll be fine.

The rest of me wants to rail at the heavens and shake my fists and stop my feet and have a tantrum and ask God why. It's like I have down times, but I can handle it. But to see my child, my baby, suffering, to know that I can't give him 100% of what I want to, 150% of what he wants...and I'm not talking materially. I'm just talking about being there....being able to roll around on the floor and run with him and not fall down or have my muscles give out or be in so much pain that I can barely move.

I want Jacob to be able to crawl on me like a jungle gym, and lay on my lap and not be in agony. Every time his little elbow digs into my leg it's like a horrible sharp penetrating pain that lasts for about 5 mintues even after I get him off me. And I hate that. I HATE that I have to push my child away physically because of pain. Sometimes, if it's not super-horrible, I just suck it up because I know it must be confusing to him. Yet there are times it's totally reflex, and I just grab his little arm to stop the agony.

I could go on and on about how unfair life is...(or wait, have I just done that??) It's just tough. I want to always convey hope and joy and be paitent. My soul is trying so hard. Every day I get up and tell God I can't do it without Him...and that's the only reason I've gotten to where I am now.

But the flesh...ah, how weak is the flesh. The flesh cries out. The flesh weeps.

The soul hopes. And as long as I have that....I will survive.

Thursday, November 19, 2009

What a Difference a Day Makes


I woke up at 6 this morning, thinking, oh YAY!!! A whole hour to myself....quiet house...Bible study... coffee...then I hear the pitter patter. More like thump-a-thump, really, of little feet. I go over to the bottom of the steps, and here is this sleepy, smiley, warm and cuddly little boy, whose face just lit up when he saw me. "Hi Mommy!" And when he got to the bottom on the stairs, ran into my arms. What could be better? I will never get sick of that as long as I live.

Jacob was a different child today. I was a different Mommy today! We BOTH slept well...what a difference THAT makes! He kept running up to me and saying, "I love you." Or sometimes he would just climb on my lap and sigh..."I love you."

"I love you, Mom." (Yes, he calls me Mom sometimes and I HATE it!) "I love you Mommy!" I seriously think he told me that 50 times today. At least. He was so happy and well behaved and fun to be was just an awesome day. He even woke up from his nap happy. That NEVER happens.

I am blessed beyond blessed. I have the most incredible child. And husband. And friends.
Can't ya just feel the love?

I'm up too late...a little slap happy. But I just couldn't wait another minute to write this post and tell everyone about my wonderful day baking cookies with my favorite three year old in the world.

Mommy loves you baby.

Yesterday was SUCH a Calgon Day

Oy vey. You guys remember (well, most of you) those Calgon commercials? The mom is dealing with 16 screaming kids, the laundry is piled up, the kitchen is a mess, she's trying to cook, there's sauce splattering all over the walls an dceiling, her face...her hair is a mess...someone shows up at her door with something she needs to pay for, her husband calls and says he's staying at work until 7 PM....and she finally just says, "Calgon take me away!" And she's immediately whirled to this luxurious bubble bath, candlelit room, hair up, looking smashing....

Well. That was me. Sort of. Only 1 child. Husband hunting. Add exhaustion and muscle weakness from MG, fibromyalgia pain so bad I couldn't even touch my own skin, and a child who was on fast forward and whose volume knob had broken off at "ear-splitting." Add 2 dogs, one of whom is capable of knocking me off my feet, a chair that I tripped on (Jacob's) to avoid said dog, wrenching my knee and "bad" hip....a headache from the pit of hell, Mommy guilt for not being physcially capable of dealing with my son yesterday...Oh, and we can't forget the adorable I'm-old-enough-to-be-your-mother Consumer's guy walking around our property spray painting trees that have to be removed, including my 100 year old pear tree (which I defended out in the rain to possibly save half the tree)!!!! I kept screaming "Calgon!!! Where are you??????"

Well, she didn't answer. Which may have been okay, because if I soak in the bathtub my muscles get too weak to get back out! And although I've lost EIGHT pounds from my new meds, I'm not quite svelte enough for my Prince Charming to scoop me up.

I'm bawling, tripping, yelling, dropping things on my feet, probably THE most impatient human on the planet at this moment, and I'm like WHERE'S MY BIBLE???? I thought, if I don't find something about being patient right this minute my head is going to pop off and spin around.

So I come across Colossians 1:9-14 (NKJV) (Thank you Lord!)

For this reason we also, since the day we heard it, do not cease to pray for you, and to ask that you may be filled with the knowledge of His will in all wisdom and spiritual understanding; that you may walk worthy of the Lord, fully pleasing Him, being fruitful in every good work and increasing in the knowledge of God; strengthened with all might, according to His glorious power, for all patience and longsuffering with joy; giving thanks to the Father who has qualified us to be partakers of the inheritance of the saints in the light. He has delivered us from the power of darkness and conveyed us into the kingdom of the Son of His love, in whom we have redemption through His blood, the forgiveness of sins.

This is why I beg for your prayers. I WILL NOT make it through this life without them. Nothing else will help. Sure, I have wonderful friends who have really stepped up and are helping me physically around the house...but the day-to-day living, where the rubber really meets the road....without God, without dear friends, some of whom I haven't even met, praying for me on a consistant basis....I simply could not do it.

So I thank you for your prayers. They matter more to me than you could ever know. Who could have thought through this blog, sitting at my computer, I can find peace, knowing there are people out there lifting me up to the Creator of the Universe.

Thank you.

Wednesday, November 18, 2009

Beautiful Story of Cancer Survivor

I recently saw this on a blog and it touched my heart. I would like to share it today. We can find a cure for breast cancer! (And other kinds!!!)

Like most elementary schools, it was typical to have a parade of students in and out of the health clinic throughout the day. We dispensed ice for bumps and bruises, Band-Aids for cuts, and liberal doses of sympathy and hugs. As principal, my office was right next door to the clinic, so I often dropped in to lend a hand and help out with the hugs. I knew that for some kids, mine might be the only one they got all day.

One morning I was putting a Band-Aid on a little girl's scraped knee. Her blonde hair was matted, and I noticed that she was shivering in her thin little sleeveless blouse. I found her a warm sweatshirt and helped her pull it on. "Thanks for taking care of me," she whispered as she climbed into my lap and snuggled up against me.
It wasn't long after that when I ran across an unfamiliar lump under my arm. Cancer, an aggressively spreading kind, had already invaded thirteen of my lymph nodes. I pondered whether or not to tell the students about my diagnosis. The word breast seemed so hard to say out loud to them, and the word cancer seemed so frightening. When it became evident that the children were going to find out one way or another, either the straight scoop from me or possibly a garbled version from someone else, I decided to tell them myself.
It wasn't easy to get the words out, but the empathy and concern I saw in their faces as I explained it to them told me I had made the right decision. When I gave them a chance to ask questions, they mostly wanted to know how they could help.
I told them that what I would like best would be their letters, pictures, and prayers.
I stood by the gym door as the children solemnly filed out. My little blonde friend darted out of line and threw herself into my arms. Then she stepped back to look up into my face. "Don't be afraid, Dr. Perry," she said earnestly, "I know you'll be back because now it's our turn to take care of you."

No one could have ever done a better job. The kids sent me off to my first chemotherapy session with a hilarious book of nausea remedies that they had written.
A video of every class in the school singing get-well songs accompanied me to the next chemotherapy appointment.
By the third visit, the nurses were waiting at the door to find out what I would bring next. It was a delicate music box that played "I Will Always Love You."

Even when I went into isolation at the hospital for a bone marrow transplant, the letters and pictures kept coming until they covered every wall of my room.
Then the kids traced their hands onto colored paper, cut them out and glued them together to make a freestanding rainbow of helping hands.. "I feel like I've stepped into Disneyland every time I walk into this room," my doctor laughed.

That was even before the six-foot apple blossom tree arrived adorned with messages written on paper apples from the students and teachers. What healing comfort I found in being surrounded by these tokens of their caring.
At long last I was well enough to return to work. As I headed up the road to the school, I was suddenly overcome by doubts. What if the kids have forgotten all about me? I wondered, What if they don't want a skinny bald principal? What if..
I caught sight of the school marquee as I rounded the bend. "Welcome Back, Dr. Perry," it read. As I drew closer, everywhere I looked were pink ribbons - ribbons in the windows, tied on the doorknobs, even up in the trees. The children and staff wore pink ribbons, too.

My blonde buddy was first in line to greet me. "You're back, Dr. Perry, you're back!" she called. "See, I told you we'd take care of you!"

As I hugged her tight, in the back of my mind I faintly heard my music box playing . . . "I will always love you."

Subject: Breast Cancer Stamp Booklet
We need those of you who are great at forwarding on information with your e-mail network. Please read and pass this on. It would be wonderful if 2010 were the year a cure for breast cancer was found!!!! This is one email you should be glad to pass on. The notion that we could raise $35 million by buying a book of stamps is powerful! As you may be aware, the US Postal Service has the "Fund the Cure" stamp to help fund breast cancer research. The stamp was designed by Ethel Kessler of Bethesda , Maryland . It is important that we take a stand against this disease that affects so many of our Mothers, Sisters, Friends, Coworkers, and Spouses of Coworkers.

Instead of the normal 44 cents for a stamp, this one costs 55 cents. The additional 11 cents will go to breast cancer research. A "normal" book costs $8.80. This one is only $11.00. It takes a few minutes in line at the Post Office and means so much. If all stamps are sold, it will raise an additional $35,000,000 for this vital research. Just as important as the money is our support. What a statement it would make if the stamp outsold the lottery this week. What a statement it would make that we care.

I urge you to do two things TODAY:
1. Go out and purchase some of these stamps.
2. E-mail your friends to do the same.

Many of us know women and their families whose lives are turned upside-down by breast cancer. It takes so little to do so much in this drive. We can all afford the $0.55. Please help & pass it on.

As many of you know, my best friend Linda passed away from endometrial cancer. It's been just over a year. One, long, horrible, painful, tear-filled year. What an amazing thing to find a cure for cancer...for ANY kind of cancer. Please consider if you can afford to buy even a few of these stamps.


Tuesday, November 17, 2009

All Things Are NOT Created Equal

Okay. There are a few things in this world that are simply NOT the same. For example, zip lock bags. (I know, you thought I was going to get all philosophical on ya!) There are some ziplock baggies that are IMPOSSIBLE to open! The plastic of the bag is so cheap and flimsy that IT breaks before the ziplock seal does! Makes me want to scream.

Meijer USED to have good ones. But they must have changed theirs, because they are now the same crap as the other cheaper brands. So it's GLAD for me from now on. I've had too much food ruined because bags have split open, not to mention the mess when Jacob is eating a snack out of a plastic bag and the bottom rips out. Ug. I know part of it is my MG, because my grip is ridiculous sometimes, but come on. Why can't they just ALL BE THE SAME, and we wouldn't have this issue???

Another thing that drives me nuts is the set-up of left turn lane traffic lights. Okay, so maybe I'm the only one who is annoyed almost beyond words about this: Why do SOME traffic lights go from blinking red to GREEN, and others (that could be a mile down the road!) go from blinking red to RED? How stupid! They need to ALL be the same, and I'll bet it would prevent some of the accidents that happen at these intersections. Makes me CRAZY.

Oh, here's another used to drive me more crazy when I was working and used number keypads all the time. Why are the 1, 2, and 3 on the BOTTOM of number pads on the keyboard, and on calculators, but on the TOP of the telephone? Same numbers. Different order. WHY???

Okay, so before you call me Monk, or call the men in the white suits and the padded wagons... I do realize that SOME things are good different....namely people. If we were all the same, life would be pretty darn boring. Unless you were like me. : ) Then it would just be CRAZY!

So maybe if all of us OCD people write our Congressmen something can be done.

Yah. I don't really think so either.

Sunday, November 15, 2009

I am a Hunting Widow

Alas, today is THE DAY. Opening Day. For what you ask? Gun season. Deer hunting. I have seen the last of my husband for a while. Well, it's actually been a while as he's been "preparing" for quite some time already. First, he had to ensure his tree stand was in tact. A-OK there.
Then, he decided he needed some more vantage points, so he built 2 more deer shacks. Or, as Jacob calls them, "deer catchers."
So we all went out to paint, and this is Jacob peeking out from within. He wants to know when Daddy is going to take him "Hun-tin!"

Well, they turned out great, and Doug put them out in the field, very strategically placed, I'm sure...I think he even put one up on stilts.

I heard a loud shot about 8:40 this morning, but it echoes so much out here I can't tell ya where it came from. Hopefully he gets at least one today, or else he'll be all grumpy. : ) He has as many licenses as the law allows, so he can get some deer meat for other families. He does the butchering himself so that A.) you know you're getting back the deer you shot, B.) You can get whatever cuts of meat you want out of it and C.) it's cheaper. That should probably be the first reason!

Anywho...saying prayers for all the hunters out there to stay safe, and get their deer!

Thursday, November 12, 2009

MG and Homeschooling....How interesting!

Good grief.

I will NEVER second guess our decision to home school Jacob, and I know we are doing the right thing, for several reasons, not the least of which is trying to keep me from contracting some icky illness Jacob brings home from school. He is also so stinkin' smart he'd be bored to tears.

It is frustrating however, to have MG and try to raise a 3 year old, and teach him. Thank the Good Lord for awesome friends that have set up people to come and help me out a couple of hours a week cleaning. And of course, my cleaning angel, Kathy, who is coming once a week. God, bless these women!!! And their families!

I had been trying to get and keep the house clean after Doug made some snide comment about living in a pig sty. (oh, yes he did!) So for two days I worked my fingers to the bone, and about killed myself doing it. (I can be a wee bit, really!)

So at dinner one night I just looked him dead in the eye and said, "Well, you can have a clean house but you'll have a dead wife. Your choice." He wisely said it looked like he'd have a dirty house. Then Shawn stepped in and made her list, and people signed up to help. It was such a relief when Shawn called I almost bawled.

But anywho...back to homeschooling. Jacob would do school every second he was awake. Until Daddy comes home and he can go outside, that is. It is exhausting trying to keep that kid busy AND challenged. He gets bored so easily, yet he gets frustrated if something is TOO hard. For example, he has brainquest cards that he LOVES doing....they are for 4-5 year olds, Jacob has been 3 for 3 months now! He knows all of them....there were like maybe 10 out of 300 that he didn't know, and most of it was stuff he wasn't exposed to, like, where does a stamp go on an envelope? Never talked about that with him.

I have some things where I think, oh he could never do this...and he breezes right through. Other things I'm like, oh this will be simple for him...not so much.

God keeps me humble though, because Jacob still has sensory issues...still puts a lot in his mouth that he shouldn't, that kind of thing. He eats about 10 different things (that are edible!) So he'll probably graduate Harvard at like 18, but still be licking his shoes. : )

I, however, am as proud as can be of my beautiful boy. He is smart and gorgeous and crazy and wild and busy and all boy. He is tender and sweet and precious, and I love him with all my heart.

Wednesday, November 11, 2009

Article by Lisa Copen about Church

Hey everyone,

This article was in my ezine from Rest Ministries called HopeKeepers. Many of you know some of the issues that churches today have with taking care of the chronically ill. Especially younger people who are chronically ill. Some already do a wonderful job of this. Some don't seem to make it a priority, but many others just don't know how to help. This is from the mouths of 800+ people who took a survery about what churches could do. This fantastic article is reprinted with permission from the author.

Ministering to the Chronically Ill: 20 Ways That Take 20 Minutes
by Lisa Copen

Rest Ministries, the largest Christian organization that specifically serves the chronically ill, recently did a survey and asked people to "List some of the programs or resources a church could offer to make it more inviting and comfortable." They have provided a sampling of some of the 800+ responses, all of which could be done in 20 minutes or less.

1. Encouragement emails.

2. Make sure the handicapped stalls in the restroom are functioning and clean.

3. Padded chairs or cushions, room for wheelchairs, and plenty of room for my family to sit with me.

4. Be open-minded about a support group for the chronically ill like HopeKeepers. It would make me feel very special, knowing that there is an understanding of people's needs that are not always visible.

5. Add more disabled parking, even if they are temporary spots.

6. Educate the ushers that people arriving late may have difficulty walking or getting out of cars and will need some assistance.

7. Ask volunteers to call people with chronic illness just to check on them when they don't make it to services.

8. When suppers are given, recognize that I may need help getting my meal--or at least understand that I won't be able to wait in a long line.

9. Be gentle when giving people big hugs. It can topple over or hurt a person.

10. Have a video tape of the service, not just a live web cast. Not all our computers work that well.

11. Make sure that the church doors aren't too difficult to open or at least have mechanical assistance if they're unusually heavy.

12. Stop telling me that if I really believed and had faith I would be healed by now. Please don't insist how good I look, because I know for a fact that I look terrible and miserable that day.

13. Offer me ways to serve within the church that can be performed regularly, but not on a set schedule. I still want to contribute, but I need some flexibility so that I can do a job when I feel well enough to do so.

14. Have sermon notes available so I can listen later or even just review what I didn't catch the first time.

15. Acknowledge National Invisible Chronic Illness Awareness Week. Rest Ministries has a nice book list of top 100 Christian books for the chronically ill. It would make a nice display in your bookstore that week.

16. Just mention chronic illness occasionally! Don't forget to talk about it in sermons as one of the challenges many people face just like unemployment or divorce.

17. Have Christian volunteers from church that will clean house for small fee. Some have offered to clean my house, but I cannot accept charity yet, but neither can I afford to pay a regular house cleaning service.

18. Help with some of the small costs of providing encouraging books and resources for the church library the chronically ill can check out.

19. Remember how many caregivers are in the church, not just caregiving for their parents, but also for their spouses or ill children.

20. Have copies of sermons for free on CD or computer.

Find over 500 ways to encourage a chronically ill friend in the book "Beyond Casseroles: 505
Ways to Encourage a Chronically Ill Friend" at

Lisa Copen, Rest Ministries Founder Rest Ministries Chronic Illness Pain Support

Tuesday, November 10, 2009

Very Personal

This will be probably one of my most personal posts ever. It regards the most sensitive, painful issue I have dealt with in life: My weight. I debated and debated over sharing this, but 1. I finally have good news, and 2. If there are other people out there, I want you to know you're not alone.

Okay, it doesn't take an Einstein to realize I'm overweight. Being on as much medication as I am on doesn't help. However, I am obssessed with food. I always have been. As far back as I can clearly remember (back to 4 years old) food has been the focal point in my mind. Not on purpose, not like, "oh, I'm going to think about food all day long." It's just always been there. When I was 4 years old, we celebrate Thanksgiving at my Grandpa and Grandma's house. Before we ate, we all went around and said what we were thankful for. Some were thankful for Jesus, others for family, or whatever...I was thankful for food. And everyone laughed at the cute little fat girl who loved food. But it never changed. And it stopped being funny.

I was a chubby toddler, a chubby kid, a chubby teen, a chubby adult, you get the picture. While I'm of short stature, I have always been one of the biggest people in the room. Before I go on, let me clarify that I am NOT a person to go through the drive thru and order 6 Big Macs, 4 large fries and a diet coke. I ate normally most of my life. I snacked more probably, and may have eaten some things "skinny" people wouldn't. But the point is, I didn't set out to be fat my whole life. But the biggest difference, I'm starting to think, is the way I thought about food.

I tried every diet out name it I've tried it. All the pills, powders, potions, vitamins and low-carb, no-carb, low-fat blah blah blah. If I did manage to lose 15 or 20 pounds, it came right back on and then some the second I stopped eating like a bird.

Now add in my medical problems, and all the medicaton I'm on: Myasthenia gravis prohibits any repetitive solid exercise. Being diabetic and on insulin makes it harder to lose weight. Being on anti-depressants can make you gain weight, as does the Prednisone. I was getting so desperate that I was looking into bariatric surgery. And believe me, after all the stuff I've been through medically, elective surgery IS NOT on the top of my list. But as I said, desperation had definitely set in. I found out however, I'm not even a candidate for this type of surgery, because I take too much medication. Not only would my new stomach fill up with the pills, they wouldn't absorb normally.

So I was really feeling like there was just no solution. I was gaining because of the prednisone, and it seemed like there was no way out. Talk about depressing.

And then.... {cue angelic music}

I went to the diabetic doctor. I got on the scale and started bawling as soon as I got into the waiting room. (And you can hold your breath forever cuz I ain't tellin!) The doc came in, and I was trying to hold it together but I just couldn't. I told her how depressed I was because of my weight, and how at wits' end I was. She says, well..."I don't normally bring this up with someone whose blood sugar is in such good control. But since YOU brought it up, there's this medication called Symlin. It's a hormone that you use with insulin, and it slows down the digestion of food, causing you to feel full longer, and you feel full faster when you eat. It also does something to the central nervous system that inhibits appetite, and helps your liver to produce less glucogen. A lot of people have lost weight taking it."

I was like....huh? For real? What kind of medication helps you eat less and feel full longer, and why has no one told me about this before??? Weight loss??? Can I start 10 minutes ago??

Long story short (I know, too late)...I'm on the Symlin. It's a shot, 3 times a day, before meals. I started last Wednesday. As of yesterday morning...I have lost.......


I can't believe it works! I take it 15-30 minutes before I eat, and I'm eating less than half of what I used to. I feel full longer, I'm on about 1/2 the insulin I was on a week ago, and the BEST part for me, is that I DON'T GIVE A CRAP ABOUT FOOD! I don't think about it, I don't dwell on it... I don't count down the minutes til I can eat stomach growls and I think, oh, I guess I should eat now.

Unless you have this problem, you really can't understand the relief. The freedom. The overwhelming gratitude for having this obssession lifted from me! I have been praying for so long. For something to work. To give me the strength to exercise, the self-discipline to not eat. I would go on a "healthy eating plan" and be so hungry. SO crabby. (Doug can attest to that!) I think the only time I'm crankier is when I'm really hot...if I'm hot AND hungry...yikes. I think my head spins around.

Doug and I were in the car on Saturday and I just broke down. I looked at him with happy tears streaming down my face and said, "Can you imagine I might dare to be thin?" I've NEVER been thin. I'll settle for healthier! But NOT be the biggest person in the can't imagine. I honestly don't care what I weigh or what size I wear...although it would be nice to be able to walk into ANY store and buy clothes!

So anyway....this is a lot of information for me to share, but I have a feeling there are more people out there like me...Now you can't get Symlin if you're not diabetic. But chances are, if you're extremely overweight, you have sugar problems. So if you DO...ask your doctor about Symlin! The shots are no big deal...I HATE needles, but the outcome is SO worth it. Sometimes it stings a little bit, but the needle is really tiny.

This is going to change my entire life.
Thank you God!!!