Friday, September 23, 2011

Is He Really Sovereign?

It hasn't been the best week.  Having to stay at home has really affected my mood.  I had gotten used to being able to go to bible study and church every week.  I had finally gotten to the point where I could do some outings.  I don't stay home well, and when I'm home alone for hours at time I begin getting really depressed.  I just have to much time to think.  I have missed the past two weeks of church.  I missed seeing Hannah cheer at her game this week.  I missed being able to attend the wedding of the "little girl" who was the flower girl in my wedding.  I've missed out ... on a lot this week.

That mentality has given me permission, so to speak, to think about all of the things I've missed over the past 3 1/2 years.  I've thought about friends I've had to move away and relationships I currently have that are suffering.  And I've thought a lot about my Nannie this week.  Oh how I miss her!

I've thought about how quickly my girls are growing up.  Sara turned 16 last week and just got her first car.  How am I supposed to let go and allow her to drive off alone?  I've missed so many things in their lives over the past 3 1/2 years, and it just seems like she should still be in the 7th grade.

I could just sit and weep for hours.

The scare with my blood work reminded me once again how uncertain life really is for me.  At any given moment things could just turn and my health could fail.  I could get a simple virus that could turn out to be ... well, deadly.  I am currently on my third round of antibiotics that started from getting strep.  It's scary.  It makes me wonder why the first 2 didn't work and will the 3rd one work.

Just way too much time to think.  Too much time to do the very thing Jesus tells not to do ... worry.

It should be a time for me be still and relish in His promises.  Like how He will never leave me and how everything ... EVERYTHING ... is for my good and His glory.

I had someone ask me if I truly believe God is sovereign.  I've prayed about how to answer that question.  The person who asked me is not a believer, and I want to be so careful.  I don't want to give a "Pollyanna" type of spin on it because frankly, life is hard.  I could spend hours upon hours thinking about all the hard things in my life and worrying about what the next hour may bring.  Actually, I have spent hours upon hours doing just that.  What I should be doing is sitting at the Throne of Grace and Mercy.

Because, yes, I do believe with every fiber of my being that He is sovereign.

I don't know why I have CIDP.  I don't know why I've had to miss out on so much.  I don't know why my suffering has been more than others or even why my suffering is less than some.  I don't have the answers to all the "why's", and believe me I have had many.  I'm not supposed to know though.  I only have to trust.

"The secret things belong to the LORD our God..." ~ Deuteronomy 29:29

A couple of days ago Mary sent me this quote ...

"Faith is not about everything turning out OK;  Faith is about being OK no matter how things turn out."

Am I really okay with how things turn out?  Do I really have that much faith?  If I truly believe He is sovereign I do.

The night before Mary sent me that quote, I ran across one I had written down almost 2 years ago ...

"And because I know Who, I am willfully unconcerned with why."  ~ Angie Smith 


It no coincidence I read that quote the night before Mary sent me the other.  He knew I needed a swift kick in the rear.

He has a perfect plan for my life.  A plan He already has worked out.  And as I reminded Mary a few weeks ago, all we have to do is trust Him and walk it out.

Although I may not know "why", I do know Who.  And because I know Who, I know how it all ends.

"Thou wilt guide me with thy counsel, And afterward receive me to glory." ~ Psalm 73:24  

He is sovereign.  I truly do believe it.

And just in case you were wondering, I still pray daily He will come and get us.

Tuesday, September 20, 2011

A Wonderful Birthday

** update **

I got a call from Dr. Gaw's office a little bit ago and she said my blood work was normal.  Praise the LORD!  He wants me to restart the cellcept.  Darryl said that if it was the cellcept that was causing the issue, my white cells would have dropped even more.  All I know is I'm seriously confused, and I'm just going to have to go on faith and trust what they recommend.  I'll have my blood work done again on Thursday.


There has been some confusion about whether or not I was actually supposed to see Dr. Gaw yesterday.  I didn't have an appointment with him.  I was just instructed to come by his office and pick up new orders for more blood work.  Unless he wants to see me earlier, I don't have an appointment to see him until October 17.  I see Dr. Peltier on October 14.  Seems like a long time away to me.  I did, however, get to have a long talk with Darryl about all of this yesterday afternoon when he came by the house.  I'm still scared, but I do feel much better about the situation.

My blood counts are off, but my white blood count isn't dangerously low.  There are multiple reasons why this could happen.  Since cellcept is so risky, Dr. Gaw is being cautious and trying to prevent things from getting critical.  If my white cells return to normal after being off the cellcept, then we will know that's probably the culprit.  That could be bad, but as Darryl, who happens to be an eternal optimist ... and a quite annoying one at times I might add ... pointed out, it could also be a good thing. (He knows I think his optimism is annoying at times.)

We think the cellcept is what is keeping me leveled out, but it could also be the disease has gone into remission.  The only way we can know is to stop the cellcept and see what happens.  I am fearful that we've had to stop it, and he doesn't think Dr. Gaw will restart it immediately after my counts go back to normal.  He thinks he'll wait to see if I start to regress again.  That scares me.  However, I do understand the only way we can know if it's the cellcept or remission is for me to stop taking it.  

What an answered prayer it would be if we discovered the disease is actually in remission!!

I asked him yesterday if I was still on house arrest.  I told him it was awful being homebound.  He laughed and said, "Aren't you anyway?"  Well, yes.  But there's a difference from being homebound and having the option of getting out from time to time, and being on house arrest.  As long as I have a fever, I'm supposed to me on house arrest.  After that I still have to be really careful though.

So, please keep your distance if you feel the least bit under the weather.  I'm seriously not trying to be rude, but a simple cold could turn into something much more serious for me.  I had strep throat 2 weeks ago, and I'm still running a fever today.  Dr. Gaw always recommends I wear a mask this time of year.  I told my friend Cheryl yesterday I just can't bring myself to do that.  People always look at you like you have some horrible disease you are going to give them.  She laughed and said, "Well, at least they'd stay away."  She has a point.  I am giving it some serious consideration this year, especially if my blood work doesn't return to normal soon.

Yesterday was my birthday, and I did break the rules.  If you really know me, you know I've not always been the most compliant patient.  I'm trying to do much better, but yesterday I was non-compliant.  After Nathan took me to get my blood work done, he took me to Ocha for lunch.  I love Ocha, but I hardly ever get to go there anymore.  I sent Robyn a picture of my plate and she replied, "That's just mean!"  She loves it as much as I do.  We did eat right at 11 a.m. and hardly anyone was there, so it's not like I was exposed to a lot of people.  Then we stopped at Verizon to get my gift.  He got me an iPhone ... and I got a PINK cover!  It's so awesome!  When we left there he stopped at Sonic to get another love of mine ... a lemon slush. : )  I asked Darryl if I could make an exception and go out for dinner last night.  He said I was a big girl and could make my own decision ... ha! ... but he didn't recommend it.  Like I said, I was non-compliant yesterday, so my in-laws took me to dinner.

I am paying for it this morning though.  My fever has spiked back up to 102.6.  I might should have followed doctor's orders.  It concerns me I've had a fever this long.  Homehealth comes Thursday and will be drawing more blood.  I don't know when I will get the results from yesterday's draw, but I can usually get the results from what homehealth draws no later than the next morning.  So I think I'll know at least by Friday if anything has improved.

Please continue to pray.

And thank you so, so much for all the birthday wishes.  I had almost two hundred Facebooks wishes, text and emails.  I had 3 people offer to bring me a Sonic drink and I have several rain checks for lunch.  I also had a friend bring me pansies.  It's very humbling to know so many people care and love me.  Very humbling.  I am very blessed and forever grateful.  I've said it before and I will say it again and again, I have the greatest friends I could ever imagine.

Saturday, September 17, 2011

The Reality of Uncertainty

Yesterday I received a disturbing phone call from Dr. Gaw's office.  I was instructed to immediately stop the cellcept and to come to the office Monday to pick up more orders for blood work.  Kathy, one of the ladies who works in the office, didn't know why.  Dr. Gaw had just told her to call me with those instructions and to make sure I understood to stop the cellcept immediately.  He never makes knee-jerk decisions.  It's been my experience over the past 4 1/2 years that every decision he makes is very well thought out and carefully made.  I knew something had to be wrong with my blood work, so I called my homehealth to ask what the results were of the last lab work they did.  My white blood count is low, hematocrit level is low, hemoglobin level is 10.8 (12 is the bottom end of normal).  She said there were some other things out of range also.  My blood counts have to be monitored carefully.  Cellcept is risky.  Remember Dr. Gaw said told me multiple times, "This drug can kill you"?

I'm concerned.  Actually, I'm scared.  I have already exhausted every other treatment there is for CIDP.  My body just can't handle them.  Steroids make me literally crazy.  IVIG gives me chemical meningitis.  I kept getting infections with the plasma pharesis.  I almost died from one of those because it ended up in my blood stream  It took them days to figure out what antibiotic it would react to.  That left cellcept.  Even though it didn't put my disease in remission, it was believed to be keeping me status quo.  It has kept me being able to walk.  I don't know what will happen now.

Since my white blood cell count is lower than they would like for it to be, and I am currently running a fever, I'm stuck at home again.  I've already had strep throat recently and right now my ear canal is inflamed.

So that means I'm stuck at home again.  No getting out.  I'm sitting here right now in tears because I was suppose to attend a wedding today.  The girl who was my flower girl in my wedding is getting married.  It is breaking my heart I can't be there.

And it also means no church tomorrow.

I told Darryl this wasn't fair.

I wonder if the increase in my pain level, the coldness in my left leg and the increase in swelling in the left leg were all signs something was wrong with my blood levels?  We thought the swelling was due to the Lyrica.  Maybe it wasn't after all.

I am grateful I have an appointment October 13 with Dr. Peltier, my neurologist at Vanderbilt.

I was reading my devotion in Jesus Calling this morning and it says ...

"YOU WILL NOT FIND PEACE by engaging in excessive planning; attempting to control what will happen to you in the future.  That is a commonly practiced form of unbelief.  When your mind spins with multiple plans, Peace may sometimes seem to be within your grasp; yet it always eludes you.  Just when you think you have prepared for all possibilities, something unexpected pops up and throws things into confusion.

I did not design you the human mind to figure out the future.  That is beyond your capability.  I crafted your mind for continual communication with Me.  Bring Me all your needs, your hopes and fears.  Commit everything into My care.  Turn from the path of planning to the path of Peace."

1 Peter 5:6-7; Proverbs 16:9; Psalm 37:5

I am scared, and I seriously don't know what the next step is.  I'm a planner, and a control freak.  So how fitting is today's devotion?

I ask that you please pray for the Lord to make the next step very clear to my doctors ... to calm my fears ... for my blood levels to return to normal ... for my body to be protected from regressing.

We have talked about another option in the past.  We have talked about treatment with rituxan.  It's considered to be experimental to be given for CIDP.  Just like the cellcept, it has some serious risk.  I would also have to have another port-a-cath put in and I'd receive the treatment at the cancer center.  He has never given this treatment and would want it to be controlled by Dr. Peltier, and he would just oversee it here.  It's not an attractive option.

I know, that I know, that I know God is sovereign.

"For I am the LORD, I do not change" ~ Malachi 3:6

"For when my spirit was overwhelmed within me, Then You knew my path." ~ Psalm 142:3

"... Even from everlasting to everlasting, You are God." ~ Psalm 90:2 

"You will guide me with Your counsel, And afterward receive me to glory." ~ Psalm 73:24 

I am so grateful He loves me. 

Friday, September 16, 2011

My Favorite Devotionals

This week for "Show Us Your Life" at Kelly's Korner we are sharing our favorite devotional and/or bible studies.  

I have a few devotionals that I love.  Right now I'm reading Jesus Calling by Sarah Young.
 I love this!  Every day seems like it was written just for me.  It's exactly what I need to hear.  I pretty sure that has more to do with the Holy Spirit and how He allows my heart to take in what I'm reading.  This devotional is beautifully written.

A couple of years ago Connie bought me Dear Jesus for my birthday.  Sarah Young wrote this one too.  I love it also!
She actually went to buy me Jesus Calling and they didn't have any in stock, so she bought me this one.  It was just what I needed.

I keep both of those devotionals sitting on my coffee table.

I also love the devotions written by Joni Eareckson TadaI own several of her devotional books, but several years ago I signed up to have a daily devotional written by her emailed to me every day.  You can sign up hereI had been getting them for almost 2 years before I got sick.  Reading something written by someone who truly "gets it" ... understands even more than I what it's like to be sick ... speaks so loudly to my heart.  There have been many days when Mary, Connie or I have emailed each other with the subject line saying, "Just in case you missed this".

It's no secret I love bible studies, but I've learned I have to be very cautious when choosing one.  Sometimes the theology can seriously be messed up.  The bible study group I've been a part of for over a year now just finished up studying the book of Philippians.  The lady who leads the group wrote up the questions herself.  It took us months to finish Philippians and I loved every minute of it.  I missed the last two weeks due to being sick and I'm so sad about that.

We've also done Idols of the Heart by Elise Fitzpatrick.
I didn't get to finish the study with the group because I got really sick in the middle of it, but I did finish the book.  It made me realize I have idols I didn't even realize where idols.

We've also done A 30-day Walk With God in the Psalms by Nancy Leigh DeMoss.

I learned so much when we did this study.

So what are your favorite devotionals or bible studies?

Thursday, September 15, 2011

Happy Sweet 16 Sara Bear!

Sara Bear,
I have loved you from the moment I knew existed.  The day you were born was one of the happiest days of my life.  Once I finally was able to hold you and I looked into your sweet face, I truly thought my heart was going to burst.  You were the most beautiful thing I had ever seen.  You will always be my little princess.

It's a bittersweet day for me.  It's so hard for me to wrap my head around the fact that you are now 16 years old.  I have loved every stage of your life, and I have been in such awe at how the Lord is molding you into His image.  However, there is a part of me that wants to keep you little forever.  I miss the days when Pooh Bear was your constant companion.

I won't tell anyone that he still hangs out in your room. : )

You have brought so much joy and laughter to our lives.  You have a smile that literally lights up the room.

You have become a great big sister.

This is the first time you ever held Hannah.  She was just a few hours old, and even from the beginning you were very protective of her.  Another little boy tried to touch the top of her head and you very quickly, and loudly, to told him to leave her alone ... she was YOUR sister.

I'm not sure what happen to your love for reading. : )  But I do know your love for your sister grows stronger every day.

I hope you will always be a Godly example to your sister.  Always know she watches everything you do.

I miss being able to rock you to sleep every night.  That was always the favorite part of my day.

This was one of the favorite parts of Daddy's day.

He's loves spending special days with you.

I love your sweet spirit.  I love how you always stand up for what's right, even when it causes people to become angry with you.

I love your laughter.

I love how you still call me "mommy".  I think you secretly love that I call you "Sara Bear".

I will always love you, Sara Bear.  Always and forever.  No matter what.

I hope this is the best birthday ever.  We won't make you bake your own cake this year.

I will make you a strawberry cake instead.

And you will be getting your car soon.  You just have to be patient until we find just the right one.  We will try our best to upgrade from your first car.

Remember to not hug the side of the road, and don't hug the middle line.  Slow down when making a turn, and watch your speed.  You may have a lead foot like daddy, but that doesn't mean you have to use it.

I love you, Sara Bear.  From the tippy, tippy top of your head, to the tippy, tippy bottom of your toes.  Always and forever my baby you'll be.

Happy 16th Birthday!  I am so blessed to be your mommy!  You are one of the absolute greatest gifts the Lord has ever given me!

Mommy : )

Wednesday, September 14, 2011

The Desire of Her Heart

My best friend, Robyn, and I have been friends since we were in the 5th grade.  We've always like to point out we were in the 5th grade, rather than say since we were 10.  Doesn't seem to make us feel quite as old as we really are.  We've been friends for 29 years ... you do the math ... and Robyn is always happy to point out I'm 38 days older than her.  In those 29 years, we've lived a lot of life together.  We've shared the happiest times in our lives, and we've shared the most devastating times.  I love her deeply, and I cannot imagine life without her.

 This picture is several years old.

We always have so much fun together and laugh so hard it hurts.  We both are directionally challenged, and it's not officially considered a road trip until we've gotten seriously lost.  Like almost end up in another state lost. : )  Seems like we've always done things together.  We both were engaged within 2 weeks of each other, and we married in the same month and the same year.  But there is one thing we weren't able to experience at the same time.  Having our children.

Right after I had Sara, Robyn and her husband started trying to have a baby.  She went through years of disappointments and frustration, but she always would say to me, "I know God is going to give me a baby."  She never doubted, but honestly, I certainly did.  Robyn never did waiver in her faith.  She hung on to her favorite verse ...

"Delight yourself in the LORD; And He will give you the desires of your heart." ~ Psalm 37:4

It was the desire of her heart to have a child, and she believed it was a God-given desire. 

When Sara was 3 years old, I had to do one of the most difficult things I've ever had to do.  I called Robyn one morning to ask her if she wanted to do lunch.  It wasn't our normal lunch day.  Every Wednesday we had lunch, but I was calling her on a Tuesday, so she knew something was up.  She was waiting on me when I got to the restaurant and as I sat down I told her there was something I needed to tell her.  I really didn't know how I was going to tell her.  Sitting in front of me was someone I loved dearly, and the last thing I ever wanted to do was cause her pain.  I had to tell her I was pregnant.  It was a very unexpected pregnancy.  I was still in shock I was even pregnant and here she was longing to be pregnant.

She laughed and said, "I knew it!  When I hung up the phone I told them she going to tell me she's pregnant."  She was so happy for me, but my heart was aching for her.  

I remember as I was watching her as she sat on my bed in the hospital holding Hannah and wondering why.  I knew she would make the most amazing mother, and it made me so angry it was never going to happen.

Several years ago Robyn was told she would never have children.  She was told her tubes were completely closed.  I talked to her on the phone not long after she came out of surgery and after we finished talking I literally threw the phone I was so angry.  I just sat down and sobbed and kept asking, "why?" over and over again.

I love her so much and wanted her to have a child of her own so badly, I remember thinking I would carry her baby for her if I could.

But even then she would still tell me she was certain God was going to give her a child.  I would nod my head and would think about how blessed some little boy or girl was going to be when she and Randy adopted them.  However, Robyn meant she new she was going to give birth to her child.

Out of the blue one night, as I was waiting on a friend to pick me up to head out for a women's retreat our church was having, my phone rings.

"Hey, I need you to sit down because there's something I need to tell you."

"Um, okay."

"Seriously, sit down now."

In that moment I knew.  She was pregnant!  All I remember after that was a lot of screaming, crying and saying over and over again, "thank you, Jesus!"

September 14, 2007 this little miracle was born.
For 11 years Robyn tried to have a baby.  After being told many times that she would never conceive, she gave birth to a healthy baby boy.  I have no words to describe how it felt to hold this precious miracle.
All I could do was cry.

This is one of my most favorite photos ever.  This was taken the day after he was born.  It was Sara's 12th birthday.  This is all she wanted to do on her birthday that year. : )
Happy 4th Birthday, Daniel!  Every time I look at your sweet little face, I'm reminded that God never breaks His promises to us.
 And He certainly does give us the desires of our heart!
You are one loved little boy!

Tuesday, September 13, 2011

Leaving Differently Than We Came

This past Sunday our RUF (Reformed University Fellowship) minister preached the sermon.  Jeff is one of those people that within minutes of meeting him, you know he loves Jesus.  He isn't boastful about it.  Actually, he's one of the most humble people I know.  He doesn't look like what the world would view as a "typical Christian".  He has longer hair, a tattoo on his arm and refers to Van Halen in his sermon ... not promoting, but as an example.  No, he isn't a typical, stuffy Christian.  He's real.  Authentic.  He's someone you can relate to.  And that makes him someone who you want to sit up in your seat and listen to.

At the closing of Jeff's prayer just moments before he began his sermon ... he said, "... may we leave this room differently than when we came."

I have given much thought to that statement over the past couple of days.  I keep asking myself, "Do I leave each Sunday differently than when I walked in the door?"  I'd love to say, "Absolutely!  Every single Sunday."  That's not true though.

Then I ask myself, "If I don't leave every Sunday changed, then why do I even go?"

I pray all week I will feel up to going to church on Sunday morning.  More often than not, every Sunday I'm not sure if I'm going to make it until about 30 mins before we are ready to leave.  Just getting ready wears me out, and the more I move, the more I hurt.  So I pray.  All through my shower I beg the Lord to give me the grace and mercy to be able to go.

But why do I do that if I'm not going to be any different when I come home?

Because I desperately need to hear the Word ... I need to be reminded of what is the absolute truth.  I need to be reminded ... yes, Jesus loves me.  He'll never leave me and never forsake me.  He chose endure horrific suffering because He loves me, and He wants me ... even utterly depraved me ... to live with Him and worship our Father for eternity.  The more I hear it, the more I believe it.  The less often the doubts enter my mind.

We had a conversation in Sunday school this week about doubting.  I sat there and listened to how going back to the Word wipes away their doubts.  How the bible was full of the promises God has for us.  I was already an emotional mess when I got to church, and that conversation sort of pushed me over the edge.

Yes, the bible is packed full of promises that wipe away our doubts.  But.  Those promises are only for those who belong to Him.

I know deep within my heart Jesus was born of virgin.  He lived a sinless life.  He suffered more than any other ever has or ever will.  He chose His suffering.  He hung on a cross.  Beaten, nails in His hands and feet.  A crown of thorns cutting into His head.  In deep agony, He hung there.  He died there.  He was buried in a tomb and three days later it was discovered He was no longer there.  He was risen from the dead, and now is sitting at the right hand of God the Father waiting to come back to get those who believe.

He did that for me.  He chose me.  He pursued me, and He melted my heart.  He loves me.  He is mine and I am His.  I love Him ... not as much or as well as I should ... but more than I even imagined I would.  He is my rock, my salvation, my ever-present help in time of trouble.  

My redeemer, yes He is!

I know this and I believe this.  But ...

There are times I doubt.  It all seems so simple.  All I have to do is believe.  Sometimes I wonder, am I really a Christian?  Do I just think I am because I want Him to love me so desperately that I've made myself believe I am?  What if ... just what if, He really doesn't love me?  Sometimes my heart is so full of evil and my fruit is just plain rotten.  How could He possibly choose to love someone like me?

Am I the only one who ever doubts?  It sure felt like it sitting in that room.

When those thoughts creep into my head and I become so distraught with fear, Connie will sweetly remind me, "If He didn't, you wouldn't care."

"If He didn't, you wouldn't even know to care."  

Only He can give me that desire in my heart.

"Delight yourself in the LORD; And He will give you the desires of your heart." ~ Psalm 37:4

There may be weeks I will leave no differently than when I walked through the door.  But I will certainly leave this world differently than when I came.

I was born in sin, but I will leave redeemed.

Saturday, September 10, 2011

Being Sick

Seems like it never fails, school starts and within a couple of weeks we start getting sick.  With Nathan teaching and both girls being in school, I'm always fearful of what virus they may bring home next.  Until this past week, I've been able to avoid being sick, but I woke up around 2:00 a.m. Wednesday running a fever and a sore throat.  Hannah had strep throat the beginning of last week, and Sara got it over the weekend.  I didn't feel well Tuesday, but I thought it was just from the swelling and excessive pain I've been in lately.  When I woke up early Wednesday morning, I knew it was my turn.

It's been awhile since I've been this sick.  My throat feels like someone took a razor blade to it and then set it on fire.  My ears feel like someone has stabbed them with a ice pick.  My eyes are sore from the high fever I can't seem to break, and they've become watery over the past few hours.  My chest hurts from coughing so much, and I'll spare you the details of what's going on with my nose.  My whole body just aches and I'm fighting a migraine.  I know it's all part of the strep, but when the symptoms linger I begin to worry the Cellcept may be the cause of it.

Cellcept is an immunosuppressant drug.  CIDP is an autoimmune disease.  The reason for using Cellcept is to lower my immune system even more than it already is.  The idea is if my immunity can be lowered enough, my body will stop attacking itself.  Although it hasn't been a cure, it seems to have at least kept me status quo.  I'm not getting better, but at least I'm not getting worse.  It's not the first choice for treatment, but because I haven't been able to tolerate any of the other treatments, Dr. Gaw felt this was the next step.  The decision wasn't made lightly.  It's risky.  In fact, when he suggested we give it a try his exact words were, "You need to understand this drug can kill you."  He gave me a lot of information about it to read, and Nathan did a lot of research on his own.  We also spent a few weeks praying about it.  

Finally I just asked Dr. Gaw, If it were you, what would you do?  "I'd take it", he said.  So I agreed to give it try.

I can't even count how many times he said, "This drug can kill you.", and frankly, it's not the most comforting thought.  Having CIDP already compromises my immune system.  Taking cellcept only adds to that.  In addition, it can cause me to get all sorts for weird diseases.  Although it's considered to be an oral form of chemotherapy, it also can cause cancer.  I have to have blood work done every other week.  I have to be very careful about be exposed to communicable diseases.  I don't ask folks to keep their distance and not hug me if they are sick because I don't want you to invade my space or to be rude.  I'm just trying to protect myself from getting sick.  A common cold can turn into a major infection for me, and I'm allergic to so many types of antibiotics.

Every sniffle causes me to be on high alert, so when symptoms linger for several days I tend to get a little panicky.  This is one of those times.  Call it paranoia.  Sometimes I think about stopping the Cellcept completely, but what's the alternative?  Without it I might not be able to walk.  I might not even be able to take care of my basic needs, like feeding myself, brushing my hair or teeth.  So, I'm constantly weighing the pros and cons.

And I pray for the Lord's protection.

Wednesday, September 7, 2011

Faithful Reminders

One of my most fervent prayers for months has been that I would be able to attend church every Sunday.  I need it desperately.  I need the fellowship, and I also need to be fed the Word.  There have been times over the past three years when I've had to miss weeks at a time.  It messes with me emotionally and spiritually, and we all know that effects your physical well-being.  The Lord has been gracious and I've only had to miss one Sunday in all of 2011.  I sure thought this past Sunday was going to be number two though.  For over a week now my left leg has been swelling worse than my right leg.  It hurts tremendously and is so cold on the inside.  My Lyrica is suspected of being the cause, so Darryl and I talked about possibly trying to lower the dose.  I totally misunderstood what he said.  For two days I dropped my morning dose.  I'm on a hefty dosage of Lyrica, and dropping my morning dose means I've cut in half what I normally take.  I always think of Lyrica as being my anti-inflammatory med and often forget it's for neuropathic pain.  Anything that effects your neurological system is going to have some significant side effects when you cut in half what you've normally taken for four years.  Obviously, I didn't think that through.  My pain level increased, my emotions were out of whack and I had a funky feeling in my mouth and lips.  When I asked Darryl about it at church his eyes double in size and he laughed.  He clarified he meant we would slowly decrease it over months, and instructed me to take my normal morning dose immediately after getting home.

I've spent many Sunday mornings sitting in the shower crying and asking the Lord to give me the strength to go to church.  I didn't even think I was going to make it to the shower this past Sunday.  I do know this.  Satan is real.  He pursued me hard Sunday morning.  I made it to church.  We were a few minutes late for Sunday school, but we made it.  I couldn't stay in Sunday school because I was hurting so bad.  I couldn't concentrate on what was being said, and I was just a distraction shifting back in forth in my chair.  I decided to just go sit in the "sanctuary".  (Since we meet in a school right now while we are building, we hold worship service in the lunchroom.)  Satan had me debating about going home vs. trying to stay.  I had been sitting there for a few minutes when a friend walked up and asked if I wanted some company.  It's amazing how the simple question, "How are you?", can cause you to vomit out what is so heavy on your heart without even realizing it's happening.

Someone I'm very close to is in complete self destruction mode.  I want so desperately to be able to save them, and I simply can't.  I've done everything I know to do ... everything within my power and limitations ... and I can't help them anymore.  It's tearing me apart.  I know the right thing to do at this point is to just turn them over to the Lord, but just because it's the right thing to do, it doesn't make it easy.  I'm seriously having a very hard time with it.  The Lord sent just the right person to me at that very moment.  Even though the details of her situation are different from mine, the basics are the same.  She gets it.  I asked her how she was able to get through her situation.  She told me she spent a lot of time in the Psalms.  She spent a lot of time playing music that fed her spirit.  She said she was so grateful the Holy Spirit intercedes for us because so often she didn't even know how to pray.

Thank you Lord for sending someone to me who "gets it" and who pointed me straight to You.

Caleb has been preaching through the book of Mark for the past several weeks.  He has taught us so much about the details in the days leading up to Jesus' crucifixion.  I've walked away each Sunday with such a deeper understanding and thinking about things in a different light.  Sunday he talked about how Pilate was viewed as being Christ's enemy, when actually he knew He was innocent and was trying to help Him.  However, the crowd wanted Jesus killed and because Pilate was so concerned about pleasing others, He chose to release Barabas and ordered Christ to be crucified.  As Caleb pointed out, it's such a vivid picture of the gospel.  The innocent one dies, and the guilty is set free.  Because of our total depravity, we deserve death.  Yet, because Jesus died in our place, as believers we have eternal life.  We are guilty, but He bore our punishment.  He gave His life to pay our debt.

Thank you, Lord, for reminding me how much you love me.

Beneath The Cross Of Jesus

Beneath the cross of Jesus I fain would take my stand,
The shadow of a mighty rock within a weary land;
A home within the wilderness, a rest upon the way,
From the burning of the noontide heat, and the burden of the day.

O safe and happy shelter, O refuge tried and sweet,
O trysting place where Heaven’s love and Heaven’s justice meet!
As to the holy patriarch that wondrous dream was given,
So seems my Savior’s cross to me, a ladder up to heaven.

There lies beneath its shadow but on the further side
The darkness of an awful grave that gapes both deep and wide
And there between us stands the cross two arms outstretched to save
A watchman set to guard the way from that eternal grave.

Upon that cross of Jesus mine eye at times can see
The very dying form of One Who suffered there for me;
And from my stricken heart with tears two wonders I confess;
The wonders of redeeming love and my unworthiness.

I take, O cross, thy shadow for my abiding place;
I ask no other sunshine than the sunshine of His face;
Content to let the world go by to know no gain or loss,
My sinful self my only shame, my glory all the cross.

This is one of my most favorite hymns.  Sunday we sang this just moments before we took communion.  As the bread was being passed, I could hear it crack each time someone would break off a piece.  It made me wonder if that is sort of what it sounded like each time the whip hit Jesus when He was being beaten.  It's a very sobering sound.

Sitting in front of me was a family that has been visiting our church for the past few weeks.  The mom was helping the two oldest break off the bread, and as soon as she handed the oldest her piece of bread, she put it in her mouth.  Her mom tried explaining to her we wait and take it together.  I smiled and thought, what was perfect picture of coming to Jesus like a little child.  

I don't really know why we wait and take it at the very same moment.  I have assumptions why, but I don't really know for sure.  So, Caleb, you are going to have to explain this to me. : )

By the time we made it home, I was so exhausted I could barely hold up my head, and I was in terrible pain.  I took my Lyrica and ate some lunch . . . and then took a long afternoon nap.  I haven't been able to sleep very well lately because I have been in so much pain.  I'm so very grateful I was able to get some sleep that afternoon.

As each moment of Sunday unfolded, the Lord was right there providing what I needed in that very exact moment.  What started out as a 
"terrible, horrible, no good very bad day" (Have you ever read that book?) ... turned into a precious reminder of how much He loves me.  A very much needed reminder He will supply all of me needs. 

"Grace for the moment, and not one moment before we need it."  I often wonder if Mary knew those words would echo in my heart so often when she said them to me.  She probably was hoping they would.  : )  

It brings me to tears when I think about how the Lord never grows weary of reminding over and over again of how much He loves me and He will never leave me.  Satan may pursue me with every thing he has, but my Heavenly Father will always go before Him and make my path straight.

Saturday, September 3, 2011

My Favorite Blogs

When I became sick I started reading blogs.  I already read a couple of blogs before getting sick, but after spending hours with only being able to sit, I rapidly grew a long list.  You can see only a few of those in the side bar of my blog, but I have even more bookmarked.

I started reading Kelly's Korner about 2 1/2 years ago.  Somehow I landed on her blog the very day her oldest daughter was born and almost died.  This week she's doing a link up of favorite blogs, so I decided I'd participate.  Quite obviously, her blog is one of them. : )

I love reading the blogs my friends write.  It's neat way to see into their lives.  Most all of them are listed in my sidebar.

Bring the Rain is probably one of my very favorites.  I can't tell you how many times Angie's writing has blessed me.  There have been so many times the words she has written have been something I seriously needed to hear.  She writes so beautifully.  And is totally in love with Jesus!

I also love, love The Pioneer Woman.  Her blog has so many different aspects to it, but my favorites are her confessions and her recipes.  I finally bought her cookbook and it arrived last week.

Boomama always seems to make me laugh out loud.  Enough said.

Big Mama also makes me laugh.  

Another Ordinary Miracle just makes me see more and more how gracious and merciful our Lord is to us.  Adrienne and her husband adopted a little boy from Russia.  She's experienced multiple miscarriages.  Had 2 failed adoptions.  Adopted a little girl from Korea.  Was out of the blue given the opportunity to adopt the little boy from one of the failed adoptions.  And finally delivered a little boy who was born very premature.  Despite multiple medical issues, he's now home and thriving.  She has been so transparent.

And I absolutely love His Doorkeeper.  She is Kelly's mom.  It such a blessing to read how she loves her family.  I love reading about how excited she gets when someone comes to Jesus.  I always smile reading her blog.

Friday, September 2, 2011

A New Chapter

I officially started a new chapter in my life this past week.  I started a part-time job that I am blessed enough to be able do from home... sitting on my couch, in my p.j.'s and I don't even really have to take a shower.  I don't know if I'm going to be able to do it, but I'm going to give it shot.

Several months ago my friend Darryl, who is doctor, told me he was closing his private practice.  I couldn't tell anyone just yet because he hadn't given the hospital his notice yet.  I sat on my couch in utter panic.  He's my doctor, the doctor that takes care of my family, and I trust him with my life and the lives of my family... no pun intended.  My mind started racing, What am I going to do?!?  WhatamIgoingtodo?!?!  WHAT. AM. I. GOING. TO. DO?!?!  HowintheworldamIgoingtokeepthissecret?!?!  Everyone is going to see what basket case I am and what am I going to tell them?!?!  It took about 5 seconds for all of that to go through my head.  Then he told me he planned to keep a few patients and see them in their homes.  Thankfully, I was at the top of the list.

I could write a 5,000 word essay on why I have so much trust in him.  It literally sends me into a major panic to even think about seeing someone else.  My disease is so complicated, and he's been there from the beginning of onset.  He actually saved my life... well, you know, with God's guidance.  That also could be a 5,000 word essay, but for now I'll save you the boring details.

Back to the new chapter...

A few weeks after he shared his plans with me, he sat on my couch one night and asked me if I would help him.  I told him yes.  I was thinking I would just be helping him set a few things up as a favor... helping out a friend.  That wasn't what he meant.  He was offering me a part-time job.  For the next few weeks I wrestled with the decision.  I've seen so many friendships that have ended badly over business.  My friendship with him is far more important to me that any job.  Darryl isn't just any ole' friend.  He's become my big brother.  He and Mary are my best friends... well, and Connie and Robyn.  We talked through it to the point of exhaustion, and I finally decided to give it a try.

August 31 was his last day in private practice.  He's now seeing patients full time in the nursing homes and seeing a few patients in their homes.  Mostly the elderly and those who are really ill.  His heart is with geriatrics, and he felt like those patients weren't getting the quality of care they deserved from their doctor.  Due to the mass volume of patients he has and the constraints on time in which he had to get everyone seen, he just wasn't getting it all done to his satisfaction.  It makes me even more grateful for him.  So often folks who are in the nursing homes become less of a priority with doctors.  Some refuse to see patients in nursing homes because reimbursement is so little.

We have spent the past week being trained on the new computer system we will be using.  Needless to say, it's been adventure.  It's been a bit frustrating, but it's also given us a few chuckles.  There have been several glitches that have had to be worked out but that's just par for the course.

He brought me a hefty stack of demographics to enter in the system, and as I thumbed through them quickly I noticed 2 of the facilities' demographics were missing.  One of them was from were I used to work.  Yesterday he brought those demographics to me.

Paper clipped together was a small stack of information from where I worked.  On the top of the stack was a fax cover sheet where they had been faxed to his office.  The first thing I noticed is they were sent from the lady who took my position.  I felt like I had been punched in the gut and my eyes started burning with tears.  

I worked there for 17 years.  I still had braces when I started.  I married and had my children while working there.  I developed friendships I thought would last a lifetime.

So I thought.

I lost my job when I got sick.  I'll admit, I'm still very hurt over the way it all happened.  I learned quickly that loyalty and longevity really mean nothing.  I learned I was quickly replaceable.  My immediate supervisor had nothing to do with what happened.  I'm not going to go into details.  It just hurts.  Even after 3 years.  It took me 3 months to even go through the stuff that was packed up from my desk, and then I just took out the pictures of my kids and the bible I had at my desk.  I threw the rest away.  I just didn't want to have anything to do with it.  Looking back now, I couldn't have gone back to work there physically, but at the time we didn't know that.

I asked Darryl, Why is it still so hard?  He reminded me it was a big part of my life for 17 years.  As we talked through it a bit, I told him the hardest part is loosing the relationships I thought would last a lifetime.  It's like experiencing the death of a friend almost.  I don't understand how people can just disappear out of your life so easily.

This new opportunity is bittersweet.  I'm so grateful for it.  It gives me a purpose and makes me feel like I'm actually contributing to the well being of my family.  It warms my heart that after all of these years, I finally get to do something to help out my friend.  But it is bringing back a flood of emotions I didn't expect.  Anger, sadness, hurt and a renewed longing to just spend time with my friends catching up.

Thursday, September 1, 2011

He Did It Again

It's been a roller coaster week.  I told a friend yesterday that I would love to take a vacation from my life.  I'd like to unplug my phone, turn off my cell phone, not check emails or Facebook and not answer my door.  I like to come back from vacation with a new identity.  As my friend reminded me, some day we will have one.  I literally pray every day for the Lord to return.  I long for Heaven more and more every day.  I daydream of what it will be like and lately I've found myself asking even more, Okay Lord, where are You?  When are You coming?

One phone call can turn your life into a tail spin.  Watching your child suffer can leave you feeling helpless.  Not being able to save those around you from self destruction can leave you hopeless.  Not knowing from hour to hour how your own health will be can leave you fearful.  What all of that should do is cause us to fall on face and ask our Heavenly Father for grace and mercy.  It was so easy for me to tell a friend a few days ago we needed to have callouses on our knees, yet running to Jesus is rarely the first thing I do.  I am so ashamed to admit that, but it's the truth.

Yesterday was one of those days that just started out bad and become worse as the day progressed.  By the time my family was all tucked in for the night, I felt utterly defeated and just sat on my couch and wept.  I am so tired.  Physically, mentally, emotionally and spiritually tired.  Although the past several days have been so heavy, there have been moments full of salt and light.  Sara's migraine is now gone.  I got to hug my friend Connie and see what her world looks like now.  The dark always seems to cover the light though.  It's the hard things that consume us.  Just when life seems to be headed for better, happier, lighter days, satan rears his ugly head.  Just as Scripture tells us, he comes to kill, steal and destroy.  Sometimes it seems like he just might win.
As I sat on my couch weeping I thought,  How dare you let me suffer so much?!?!  I didn't say it, but my tone with Him sure did.  I am grateful my questions and shaking my fist at Him doesn't cause Him to love me any less.  It doesn't take Him by surprise.  He knew I was going to sit on my couch and scream at Him, Hasn't my "I've suffered enough account" been paid in full already?!?!?"

As quickly as those words left my mouth, I was reminded of the cross.  There has never been, and there never will be, anyone who has suffered more than Christ.  I am kicking and screaming because I think my sufferings are so hard, but what if He had?  What if He had told our Heavenly Father His account was paid in full and He was done?  Instead He chose His sufferings.  He didn't kick and scream.  He walked the path to the cross and hung there for me, so that one day my suffering would end for eternity.  Because He chose to endure suffering that will far outweigh mine and died on a cross to cover all my sins, I will spend eternity in paradise.  Everything I've ever done wrong and will, has been covered by the blood of Jesus.  I am forgiven and my account has been paid in full.  Not because of anything I've done.  Jesus paid my ransom.  Even knowing I would kick, scream, shake my fist and ask why with the attitude of "how dare You", He still chose to cover my sin with His blood.

I remember my friend Mary telling me a few years ago, "If you would stop kicking and screaming against God's sovereignty this might be a little easier."  Mary, one of my absolute best friends, my big and wiser sister and one the Lord has placed in my life to keep me in check.  Oh how I love her, but sometimes she can make me so angry when she puts the truth smack dab in my face.

The truth is I would be hopeless if I didn't completely believe God is sovereign.  He has a perfect plan, and He's already worked it all out.  I can worry, wrestle, allow my life to be consumed with fear and doubt.  However, it's all in vain.  It does me no good.  It only causes me to be deceived into thinking satan is going to win, but He's already lost the war.  He may try to destroy me.  But Praise Jesus, because of His grace and mercy, I am indestructible!

As I type this and still in my heart am asking, Lord, where are you?, the sun is rising.  As the sun rises, He's once again reminding me, "I am here.  I never left.  You thought the darkness would cover My light, but I am here to remind you it never will."

 Thank you, Lord, for loving my enough to "do it again"... for reminding me that although the darkness so often tricks me into believing You aren't there, You will always and forever rise up the sun to show me differently."