Tuesday, February 26, 2013

Potty Language (Really!)

Top Ten Reason You Know You Have IBS/Spastic Colon/Colon Issues/Nerve Problems/"Tummy Trouble"/Gut Rot:

10. You now KNOW that Angel Soft was NOT made by angels.  In fact, it was likely made by hideous elves that never have to poo.

9.  You know exactly how many tiles are on your bathroom floor, including the partial spaces, which you add in to make the total.  (47)

8. You know exactly how many tiles are on your bathroom ceiling, including the partial spaces.  (76)

7.  You're in the kitchen and your son looks at you and says, "Where's my real mom?"  And you say, "I AM your real mom!" And he says, "You can't be.  My REAL mom is always in the bathroom!"

6.  You kept an old cellphone instead of trading it in because it has a Scrabble game on it that you love to play, and that you are very, very good at.

5.  Your hands go numb from playing said Scrabble game.

4.  You buy baby wipes.  And you don't have a baby.  (But you DO have "Angel Soft" toilet paper!)

3.  You've written an entire movie in your head in a singular day on the "throne."

2.  You thank God every day for indoor plumbing.

And the number one reason you know you have... (see headline) IS:

1.  You wonder what kind of day it is when your highest scoring word on Scrabble (see #'s 5 & 6), worth 140 points, is "jackass." (sorry mom)

Monday, February 25, 2013

My Little Artist

When Jacob was little, like 18 months to 3 or 4 years old, he wanted NOTHING to do with coloring.  If you DID give him crayons at 18 months or 2 years, he would put them in his mouth.  Mm-hm.  So he was a very late bloomer as far as coloring and drawing.  I remember seeing the twin girls of friends of mine at about 3 1/2 coloring in coloring books just PERFECTLY and I was like, um...okay!
I know there is usually a difference in boys and girls and coloring, but this was a HUGE difference.  But then of course, my child was adding fractions, so hey.  I wasn't complaining.

Very recently, Jacob has taken an interest in drawing. (AND he now colors inside the lines!  Which he is ONLY allowed to do in coloring books.  In life?  NO WAY!)

So I thought I'd share (MOM) some of his drawings.  Enjoy.
His first parrot.  The things on the left are food and water holders.
Jacob's FAVORITE things to draw:  Dinosaurs!
One of my favorites...The T-Rex isn't trying to shake hands (what it looks like to me)...and the red one is a Triceratops.

Sunday, February 24, 2013

What Is Your Legacy?

I finally finished the Bible study "RUTH" by Kelly Minter.  My friend Joanna and I started it, I don't know, 2, 2 1/2 years ago?  I remember getting the book in the mail, reading the back cover and bursting into tears.

Doug was like, "What on earth??"

I said, "Joanna is going to move!"

Doug: "You got that from the back of a book?"

Me: "Yes!  It says right here:  'Ruth's journey of unbearable loss, redeeming love, and divine legacy comes alive in this six-week study'."

Doug: "Um.... Okay."

Me: {sobbing}  "Don't you see it?  UNBEARABLE LOSS!  Joanna is moving away.  She's Ruth!  She's leaving her homeland!"

Doug:  {looking like he's rather be anywhere but in the same room, house, heck, planet as me}
"Ummmmmmmmm.........I've got chores to do...."

See, Joanna was the ONE friend I had around here that I EVER did things with.  We had done a previous study by Kelly Minter, and one by Jennifer Rothschild, and now we were going to do Ruth... and I knew God was preparing ME for my best friend to move away.  This was at least 2 1/2 years ago.

Last June, she moved to Indiana.  And my heart broke.

And I put down the study of Ruth, because I was mad.  I was so mad, that after everything God had already allowed to be taken from me through disease, He was going to take my best friend.

Well, I recently started an accountability relationship with a friend of mine in Florida, (the one who is coming to visit me in 29 days!!!!!!) and part of that was doing a Bible study at least 5 days a week.  So I picked up Ruth.  It was time to finish this study and move on.

So I did!  And I have a whole new perspective.  I mean, I have loved, and I have lost, let me tell you.  But the one thing I haven't ever really thought of is my legacy.  What will I leave behind?  Anything that is not from my heart, in my mind, spirit or soul is temporary.  Everything material that I have will eventually be gone.

It is what I meant to people that will remain.  How I affected their lives.  IF I affected their lives.  How I raised my son.  What I did to help people.  How I dealt with heartache and hardship.  In the book of Ruth, it has part of the genealogy of Jesus.  Ruth was part of that.  But she didn't know that when she was living.  She was merely obedient to the God of Israel.  Her obedient and compassionate heart led her to be the great-great-grandmother of our Lord and Savior Jesus Christ.  That's a pretty big deal!  But she had no idea that would happen.

What will I be a part of that I don't know about?  What am I leaving behind?

What are you?

I just want to KNOW that when I get to heaven I will hear those words from my God, "Well done, good and faithful servant."  THAT'S what matters.

Saturday, February 23, 2013

New Journey

Well, I'm starting something very different (for me) on Monday.  I have the opportunity to work with a life coach for a one-month free trial.  So starting Monday, I have a life coach.  I've actually already texted with her like 29 times.  She's really awesome...her name is Kristen.

My dear friend Tracy, who is coming up at the end of March (in 32 days!!!) referred me to her.  We're going to work on my crazy schedule and time management to start with.  Because I have like enough stuff to fill 30 hours a day, and there's only 24, plus I DO require some sleep.

I'm looking forward to it for many reasons, not the least of which is I need to get some organization in my crazy life!  But also, Kristen is a VERY optimistic person.  Reminds me of the person I used to be.

I don't like being negative.  I don't like being the glass is half-empty (or, worse yet, "What glass?") kind of person.  It's not WHO I AM.  I am happy.  I am upbeat.  I am the FUN girl.  But I am lost, and between God and my new life coach process, I'm going to see if I just can't find her again....Because I really, really need her to come back.

Prayers welcome!

Tuesday, February 19, 2013

Letter To God For My Friends

Dear Lord,

I have a favor to ask.  See, I have a lot of friends who are hurting right now.  I've got some friends who have emotional hurt and some with physical illness.  See, the thing is God, Your Word tells us that the thief (the devil) comes only to steal and kill and destroy.  I'm not Pentecostal, I'm not Baptist or Methodist or Church of God or Church of Christ or Wesleyan or Catholic.  I'm just a God-follower, and I read Your Word God.  And that's what it says. So I am rebuking that enemy.  That thief.  That killer.  That destroyer.  I rebuke him in the name of Jesus.  Don't let him hurt my friends any more God.

Peter wrote a letter to Christians in Rome and said, "Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour.  Resist him, steadfast in the faith, knowing that the same sufferings are experienced by your brotherhood in the world. But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you."  Well, that's what I'm asking for these people I love, Father.  I'm asking that you perfect and establish them.  That You strengthen them and settle them.  

There is so much suffering Jesus.  So much.  Babies are dying and people are killing each other and sickness is rampant.  We live in a broken, dying world, and bad things happen to good people every. single. day.  

But you tell us, God, that YOU came to give us life.  And to give us life to the fullest.  Not just any ol' life.  Life to the full.  Filled with abundance.

And so, Father God, in the name of Your Son Jesus, I ask that you would come to the aid of my friends that are emotionally or physically hurting right now.  I ask for Your healing touch on their bodies and minds, Lord.  Touch their hearts.  Let them know in an tangible way that You love them.

Thanks.  Thanks for this, and for all the other amazing things you are about to do in their lives.
In Jesus Name...
Amen.

Wednesday, February 13, 2013

My Not So Little Snowman

Very labor-intensive, this castle-building stuff!
We've been getting snow.  And LOTS of it.  And my child is in heaven.  He LOVES playing outside in the snow.
He loves fighting bad guys and building forts (so he has something to defend, of course!) and sledding and building snowmen.


He LOVES sledding with Daddy.  Doug gets on the big innertube, Jacob climbs on top of Doug, and off they go.
Then there's the long walk back up the hill.  Blackie leads the way, just like he does on the way down.  He runs in front of them, constantly looking back over his shoulder and barking the entire time.  It's hilarious.


Then he comes in, looking like a snowman himself!

I am not so crazy about winter because it's hard for me to go outside, but I LOVE it for my boy.  He just loves it.  And he's getting way too grown up way too fast.

Tuesday, February 12, 2013

Probably Not A Popular Post

*I wrote this post a few weeks ago, but I was so emotionally charged I wanted to wait until I could re-read it with a calm mind.  Nothing in my opinion has changed, so I'm posting it.

Guns.  Gun control.  Joe Biden.  Barack Hussein Obama.  I am SO disgusted by our "Commander In Chief."

Before I continue, let me make one thing very clear:  what happened at Sandy Hook was the most tragic, devastating event that could possibly happen at an elementary school.  Anywhere for that matter.  I grieve with the parents, sisters, brothers, and friends of the people who lost their lives there.  It was horrific. There is NOTHING I wouldn't do to be able to change what happened.

Wednesday, Obama held a press conference regarding the Sandy Hook tragedy and gun control.  In the audience were parents and family members of some of the victims.  On STAGE were 4 children who had written letters to the president about "wanting to be safe" and  being "worried about their siblings in school." (Which I think is both precious and gut-wrenching at the same time.)

As he quoted each child's letter, he asked them to wave.  Each child was a different ethnicity.  And after he mentioned all these darling children, and their letters, he said that it was "our number one priority to ensure the safety of our children."

Really.  This from a man who said about his own children: "I have two precious daughters - they are miracles... Look, I got two daughters - 9 years old and 6 years old. I am going to teach them first about values and morals, {not sure how you can teach something you don't understand...} but if they make a mistake, I don't want them punished with a baby. I don't want them punished with an STD at age 16, so it doesn't make sense to not give them information." {stuff in brackets, mine}
http://www.thepoliticalguide.com/Profiles/President/US/Barack_Obama/Views/Abortion/ (emphasis mine)

This same website had this information:  "On January 22, 2012, the White House issued a press statement noting the 39th anniversary of the Roe vs Wade decision. That statement asserts that abortion is a "fundamental constitutional right", and abortion is a private family matter, and that we must ensure that our daughters have the same rights, freedoms, and opportunities as our sons to fulfill their dreams. These statements were heavily criticized by pro-life groups as similar to previous remarks in which a baby was seen as punishment." (emphasis mine)

So he means the safety of children that are OUTSIDE the womb.  M'kay.  Just wanted to clarify.  Since he clearly stated that America's NUMBER ONE priority was the safety of our children.

And then he went on to talk about guns.  I just couldn't help but feel that this was just a dog and pony show.  It was SO staged, SO dramatic, SO "politically correct."  I about wanted to puke.  All the media had to do was put the "halo" lens on.

How dare he use such a horrific incident to make himself look good?!?!  Disgusting!  And I'm surprised I'm the only person calling him on the carpet for it!

Gun control will always be a hot button issue.  People are either for or against, and they probably won't switch sides.  But you know what?  Guns don't kill people.  Sick people kill people.

Instead of all this talk of gun control, how about raising awareness of mental illness?  How about parents actually paying attention the the signs their children are exhibiting?  If Johnny starts wearing all black, buys a trench coat and starts talking about blowing up his school, maybe we ought to take him seriously!   Or at least ask a few questions.  If you look at all the people who have committed past mass shootings, I guarantee 90% or more have or have had some altered mental status.  Normal people do not go into public places and blast people away.

I know this probably will tick a few people off, and I'm okay with that.  I mean, think about it:  How many crimes are committed with guns registered to the offender?  According to Jeffrey A. Roth, criminologist and associate director for research at the University of Pennsylvania's Jerry Lee Center of Criminology. "According to the latest available data, those who use guns in violent crimes rarely purchase them directly from licensed dealers; most guns used in crime have been stolen or transferred between individuals after the original purchase."

So how is "gun control" going to do anything but take guns away from honest citizens who use them to defend themselves?

I guess all I'm saying is that there's so much more to violent crime than the weapon used.  


And that the president should be ashamed of himself for using something as heinous as Sandy Hook to try to make himself look good.  

Sunday, February 10, 2013

Plasmapheresis

This is a plasmapheresis machine.  Yes, I'm sure that's the technical name for it.  I've had lots of questions lately about what plasmapheresis is, and how it's done.  This is actually one of the older machines (that I prefer).  They have a newer machine that's supposed to be more effective.  Not sure how that could be since it does the very same thing.

So.  Here's the procedure:
 
I have to go to the hospital for treatments every 4-6 weeks (Hope this doesn’t gross you out)…they use big ol’ needles, one in each arm.  One arm is the “draw” arm, where the machine takes the blood out.  Then it runs through the machine, and the machine spins out the plasma in the blood. The machine spins the plasma out of MY blood, and puts something called albumin in my blood.  This is a liquid made up of several hundreds of donors who have donated plasma like to the Red Cross or at a blood drive or whatever.  Then that blood, with the new albumin in it, goes back into my body through the needle in my other arm.  It takes about 1 ½ hours hooked up to the machine, and I feel pretty lousy the rest of that day and the following day, then I feel better.  I should have at least two treatments at a time (with one day in between treatments).

I am BLESSED to be able to use my arm veins. I've been using them for 11 years.  That's a miracle, really.  Most people who get plasmapheresis have to have a catheter put in every time they have a series of treatments, and many of those have to STAY in the hospital.

I used to go to Ann Arbor once every 3 weeks for only one treatment, and it wasn't doing any good.  Kept me alive, I guess that's good...but I wasn't improving. If anything I was getting worse.  The stress of the drive both ways took away any benefit I was receiving from the actual treatment.  Now, because of a wonderful reunion with an old friend (thanks to facebook), I go to a local hospital, and can get a treatment done in one afternoon.  

My new/old friend used to live next door to me when I was little.  She also worked at St. Mary's hospital and KNEW that they did plasmapheresis because she worked in the unit where it was done, and told me who to call and everything.  What a direct blessing from God!!

So anyway.  That's pheresis.  If you have any questions, I'd LOVE for you to ask away!  

Oh, one final thing.  If you ARE able to donate plasma, PLEASE do it at the Red Cross or another reputable blood donation center.  The places where you can go to get paid to donate plasma are independent businesses who profit from that plasma.  It is NOT used for people like me who need it to live.  It's sold overseas for exorbitant amounts of money, and is used in things like cosmetics.  No lie.  So PLEASE investigate and be aware of where you donate.

For those of you who DO donate, THANK YOU!!  I'm literally alive because of YOU.  

My Medical Week

Okay, so I have NO excuse for not posting Tuesday.  But Wednesday we left the house at 9:20 to go drop our van off for service, then it was lunch and to the hospital for plasmapheresis.

Jacob had to go with us because he seemed to have had a little cold, and I wasn't taking ANY chances with my dad's health (or my mom's...) and I have to tell you.  He was PERFECT.  All the nurses loved him, and he was just amazing.  He sat so nice and drew like 6 or 7 pictures for the "girls" (nurses).

He was polite and used good grammar and good manners and made me the proudest Momma I could ever be!  It was everything you prayed for and nothing you imagined! LOL  Seriously....my child is BUSY.  And he is LOUD.  And I love him for that.  So, I imagined that he would be tearing up and down the halls of the short stay unit terrorizing patients who had just gone under the knife.

But no.  My angelic, rosy cheeked child sat and colored, and drew, and made several trips around the corner to visit the aquarium in the surgical waiting area. :)  He was SO perfect.

Pheresis was okay on Wednesday but SLOW.  I only ran 80, so it took OVER 2 hours.  UG.

Thursday was spent recuperating, and Friday was another long day.  Only THIS time, my friend Shawn's son Rick was available to watch Jacob.  YAY!!!  I knew I couldn't expect him to be SO good again all day long.  This time we still left about 9:20, but first I had a pulmonology appointment, and THEN pheresis.  (Got all the way up to 95 on Friday's treatment! Woo-Hoo!!)

Yesterday was another day of recuperating.  Today I'm doing pretty well, especially since Doug let me sleep in. (Love you honey!)  OH, wait...he doesn't read my blog.  Oh well.

SO.  Back to pulmonology.  I have the best doctor.  If you live locally, and you ever need a pulmonologist, see Dr. David Shen at St. Mary's.  He's awesome.  He's super knowledgeable, but he also takes the time to REALLY listen to YOU, the patient.  He trusts that I know me better than he knows me, and I appreciate that SO much.  He's also very thoughtful...like he really thinks about every angle of what we can do to solve a particular problem.

In this case, it's the problem of the coughing-up-of-blood-from-the-lungs.  I had taken pictures of my suction machine (don't worry, I won't post them) with the amount of blood I had been coughing up as well as the time frame in which said coughing occurred.  He was....impressed.  Not in a good way.  Although he thought it was good I took the pictures. Go me!

So here's our plan:  I have a CT scan on Friday to rule out any "big" problems...masses, etc.  This is NOT a likely reason that this is happening, but I had a CT a year ago kind of for the same thing, so this will be a good indicator if the health of my lungs has changed drastically in the last year.  I would say it has not.

Then, he gave me 3 sputum (SUCH a gross word if you ask me) culture bottles, so that IF I start coughing up copious amounts of the red stuff again, I can hack into the cup and bring it to the hospital with the order he wrote to test for bugs (the germy kind, not the 6-legged kind).  I have 3 bottles so that I can do this 3 days in a row, and they'll test all 3 samples.

PLUS he gave me a prescription for Cipro, the ONLY antibiotic I know I can take, to have on hand in case I get really sick on a weekend, or say, if we are out of town or whatever and get really sick (lung-wise) I know I can get this filled and not worry.

So I would say our bases are covered.  He is awesome, is he not??

I was SO devastated when Dr. Lovy left.  And don't get me wrong...he is missed.  But if anyone had to replace him, I sure am glad it was Dr. Shen. :)  God is good!

Monday, February 4, 2013

Featured Today at Mommy Monologues!


I am over. the. moon. to be featured today over at Mommy Monologues.  I have known Kate for what seems a very long time, but I'm not even really sure how long it's been.  I'm pretty sure we met through SITS.  Then, I found out that her mother-in-law has MG!  So not only did Kate and I have MG in common, but she is also just one pretty cool chick.

There is a giveaway over there today as well... $25.00 to spend at kerriscreations.com!  So what are you waiting for?  Head on over to Mommy Monologues and give Kate some love!  (Oh, and enter the giveaway too if you'd like!)

Saturday, February 2, 2013

MG Strikes Again

Hey everyone.  My goodness, MG has been kickin' my BUTT this week.  Just not feeling my "normal."  Which is pretty darn arbitrary, actually. LOL. I mean, my "normal" hasn't had any rhyme or reason well, pretty much my whole life!  I've always been the star shaped peg trying to jam my way into the wrong slot.

Sometimes I think I still feel that way.

That's one thing about chronic illness that is really hard for other people to understand, unless you have walked a mile in my slippers, ya know?  Inside, nothing has changed, except I struggle a bit more with depression than I used to.  Not a ton, but some.  How could I not?

But like, I still want to do and be everything I wanted to do and be 20 years ago.  It's just that now I have this body that holds me prisoner, preventing me from doing those things. 

I still want to go out and have fun!  I used to be a FUN person!  I used to be the life of the party.  Now there's no parties to be the life of!  And that really bums me out. 

Lots of people say it's because of where I live.  But it's really not, because I'm talking about MY ability to leave.  It doesn't matter WHERE I am; if I don't have the strength to get dressed, I'm not going anywhere.

I want to go out for coffee with a friend.

I want to go to movies and not have to worry about who in the crowd MAY have a cold, knowing that the ONE person who MAY be ill will indubitably sit immediately behind me and hack on me all movie long.

I want to take my son to museums and children's parks and all the places that are nasty, germ-filled, over populated, and understaffed just like every other kid gets to.  I want him to go to bouncy houses and Chuck E. Cheese and movies and shopping malls and play in the play areas where there are 300 other children.  (Okay, maybe not Chuck E. Cheese.)

I want to be able to let him explore the world like any other "normal" kid.  But I can't. 

It seems like as the years go on, my lungs get worse, especially in the winter.  Every time I get sick lately I either get pneumonia or cough up buckets of blood.  So I feel like I have to rob my child of all those fun things.  And it's the crappiest feeling in the world.

On the outside, if you see me out (I HAVE been known to leave the premesis), I look good.  Because I have my hair done, make up on, and I slap a smile on my face.  But only I know what's really going on inside.

It's just tough, sometimes, to have people wonder why you can't just "buck up."  Believe me, I want to. My head wants to, my heart wants to, but this %!#%^ body just won't cooperate. And it get really old trying to explain.

So I ask you all to just bear with me, and in the words of a dear, sweet, MG friend, let me "walk with [you], awhile and hold [your] hands so [you] can guide [me] through the tears."