Wednesday, June 27, 2012

More Info in Today...

Thank you for all of your notes after my very desperate "valley-cry" post yesterday.  I am better today and feel much more in the shelter of God's wings.  His wings were there yesterday I was just not under them (my bad, not God's)!  Praise already - I went to the dentist this morning, so mark one thing I "wasn't able to do" off the list!  And two sweetheart friends, Summer and Candra, have offered to do something fun with and for the kids in the near future - Thank you!!!!!

Two friends shared wonderful thoughts after my down-in-the-dumps day yesterday and they both led me to Philippians 4...

I have learned to be content whatever the circumstances.  ---Philippians 4:11

Please pray that I will choose contentment in this new "norm" for my life - however it ends up.  This verse came from my dear friend that has had MS for years.  She leads a full, thankful and admirable life that I want to emulate.

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things.  ---Philippians 4:8

This was a reminder from a good friend that if I focus on the bad things they will hinder forward-progress.  But if I focus on the positives and let God's peace rest on me and not stress out, I will be able to move forward.

They're good reminders for all of us, no matter what circumstances you're in and what situation you are facing.  I am praying for so many of you too - those who I know have burdens you are bearing.  We each have burdens and sufferings and whether they seem great or small relative to anyone else's life, God cares about each and every one.  They are vitally important to Him and if He cares about the little birdies in the Target parking lot having enough popcorn to eat, surely He cares for us immeasurably more and will take good care of us (my interpretation of Matthew 6:26)!

On a medical note...
I talked to the PA at my doctor's office in Austin today and he gave me a lot of info that was SO helpful.  It still leaves me confused but confirmed some of the things I needed to know.  I wanted to outline these scenarios here and ask you all to pray for each scenario:

1) Move forward with the "craniotomy" (THAT is a scary word - that's severing the nerve from the brain) and/or the Gentimicin (toxic) shots.  The craniotomy has a 95-98% success rate to stop the dizziness.  The shots are about 85%.  I could do the shots first and if they are not successful, move forward with the surgery later if I wanted.  These are both considered "destructive" procedures.

BOTH OF THESE OPTIONS  WILL RENDER MY LEFT VESTIBULAR FUNCTION (BALANCE) COMPLETELY NON-FUNCTIONAL.  All of the balance function for my body will be controlled by my right ear.

2) Keep doing VRT (vestibular rehab therpay) and be aggressive with it.  The kicker here is that I MUST come off of the anti-dizzy medicine I take for the VRT to be effective.  I have been unsuccessful so far in trying to come off of this medicine.  This medicine essentially is a sedative to the brain and slows reflexes to the brain (including the vestibluar system).  So coming off of it is going to be EXTREMELY DIFFICULT b/c without it I get very, very dizzy, plus amping up my VRT is going to make things worse too.  BUT the only way to rebuild my left ear is to challenge it (YUK!)

Option 1 sounds really, really good to me.  No more dizziness with a quick procedure.  Until I consider this...

Today, my body has a completely functional right ear and a dysfunctional left ear.  If I do option 1 above and I get Meniere's in my right ear, I will have a dysfunctional right ear and no functionality in the left ear.  The PA said that if I do option 1 and anything ever happens in my right ear they would never do the same "destructive" procedures in my right ear b/c that would take away 85% of how my brain sees the world (this probably means wheelchair and severe disability).

There's a faith factor on both sides: 1) Do I move forward with Option 1 and have faith that God will protect my right ear for the rest of my days? or 2) Do I have faith that God will heal my left ear completely and miraculously so that I can function again and get back to "life"?

I know that no one can make this decision for me.  I wish each of you could just vote and I'd be done with it.  I'm asking for your prayers but I'm also asking for your thoughts.  As a point of curiosity, what would you do if this was your decision to make?  Not what your decision-making process would be, but which choice would you make?  Again, just curious!  Please let me know and I will keep you posted.

Tuesday, June 26, 2012

Still So Confused

I am writing through tears this afternoon.  I want my life back.  It may not be the same life and that's ok, just some semblance of one.  My family and I went to church on Sunday - we left before the preaching started - I couldn't make it through.  I had to call a friend to drive me and the kids to their dentist appointment yesterday b/c I couldn't take them alone.  Jonathan is on his way home early today to drive me to counseling b/c I can't get myself there.  Yesterday again, for the what seemed liked the millionth time I told my kids that I couldn't take them to McDonald's for lunch b/c I had to lay down and I couldn't drive them there.  I've cancelled my bi-annual dentist appointment 4x b/c of something related to my Meniere's.  The last 2 nights in a row I couldn't tuck my kids into bed.  There is a big family event I want to attend this weekend but unless a miracle happens in the next few days I won't be able to - so while Jonathan and the kids go I'll stay home alone.  I've promised Lydia all summer that I would take her for a pedicure.  I've promised Beau I would take him to Toys R Us so he could spend a birthday gift card.  They ask me almost every day "when?" and every day I tell them, "I can't today.  I'm so sorry." I know all of this probably seems extremely petty and trivial, but it all adds up over time.  I'm sick of it.

What's so completely frustrating is that I know there are procedures available that will make all of this go away.  So the question is, "Then why don't you do that?"  And the answer is, "I don't know".  Truly I don't know what I'm supposed to do.  I want to allow God all the time He needs to work and if I do one of these procedures have I allowed Him that?  Trust me, I've been told and thought numerous times of the story of the man who drowns in a flood and doesn't take the helicopter or boat that comes along b/c he's "waiting for God to save him" and when he gets to heaven he asks God, "Why didn't you save me?" God replies, "I sent a helicopter and a boat.  What more were you hoping for?"

This morning I was reading in Isaiah about the Messiah:
Yet it was the LORD'S will to crush him and cause him to suffer...
After he has suffered, he will see the light of life and be satisfied.  --- Isaiah 53:10-11

This may be controversial but I do believe that sometimes it is God's will to crush us and cause us to suffer (not allow it like He did Job, but cause it as the scripture above says).  It's how he breaks us and if he did it to His only begotten son, surely he would do it to me, his adopted daughter.  And I know he doesn't do it out of spite, malice or ill-will.  He does it out of love.  He wants me to the best me I can be and unless he gets my attention that will never happen.  He gets my attention through the crushing and the suffering!

The wait for the Mayo clinic is 4-6 months.  I am beginning the process anyway and still praying for my miracle in the meantime.  I also am praying for some peace or guidance regarding the shots that will kill my nerve.  I'm not considering surgery b/c it is so drastic, but the toxic shots that should take away the dizziness are becoming more and more viable to me.  I am still sticking with my vestibular rehab therapy (VRT) too b/c I believe it has helped a LOT.  I'm just having to push myself every day b/c I'm already dizzy and the therapy makes me dizzy.  It's like forcing yourself to eat pizza after you've just thrown up, you know?  Is that a bad analogy?  I don't know; I can't think straight!

Even through my tears, I know God has a plan.  Please pray along with me that my role in His plan (whether to be reactive or passive) becomes crystal clear to me.  Thank you for all of your love and support - it is life to me!

Friday, June 22, 2012

The Roller Coaster

So, the ride continues... after a couple of really good weeks - driving again and being more "normal" I am back to dizzy and despondent, not driving and spending lots of time in bed.  I am having a hard time finding God in all of this... here's what's going on:

Last Thursday, June 14, I just didn't feel so great.  I chalked it up to a number of things and kind of dismissed it, but just knew something wasn't quite right. 

Friday I felt better but still not quite right. 

On Satuarday I woke on the verge of a migraine and some sinus pressure.  It was Beau's last t-ball game and I wasn't about to miss it.  So I went to the 4-inning double header in Saturday's heat - of course the sinus pressure and headache got worse.  But Beau hit 2 singles and a double so it was ALL worth it.  Anyway... I came home and from noon until Sunday morning stayed in bed. 

Sunday I got out of bed but was in and out of bed all day nursing the same migraine.  My teeth/cheeks/forehead were killing me so I assumed some horrible sinus infection had settled in (again) and that was the cause of it all. 

Monday wasn't great.

Tuesday wasn't great.  In fact on Tuesday I went to bed at 6:30 pm - staggered down the hall b/c I couldn't even walk straight - and took EXTRA anti-dizzy medicine and laid for TWO hours with the bed violently spinning.  I was extremeley nauseaus and got very, very close to a vertigo attack.  To say that I was bummed is a total understatement b/c I thought all of the violent spinning and vertigo was behind me.

On Wednesday I went to the doc and got a sinus x-ray.  I was certain the sinus x-ray would show all kinds of infection to explain why I was feeling SO bad from all of this and the dizziness was getting worse by the day. 

Thursday I went to therapy and couldn't do much b/c I almost fell over trying the simplist of exercises.  I got a call that afternoon that my x-ray was totally clear.  I was so hoping that would be the answer but it was not.

Today I am dizzy again.  I laid down for about an hour at 1 pm and the whole time I laid there I was just rotating around and around.

So, where does this leave me?  SCREAMING, CRYING, SEARCHING... I truly believed I had the worst behind me.  And though I expected some bumps in the road, this week+ of feeling so dizzy and seemingly getting worse is not good news.

I was mad at God yesterday.  But He and I talked at length today and I'm not angry anymore.  I am really sad and confused.  I truly believed that He was going to heal me completely without any additional medical treatments - and that still may happen; I believe that it can.  But I just can't understand why this setback (from a medical perspective it just doesn't "make sense."  There is no reason to explain why the dizziness is back or I can't feel well).  I guess that's why he tells us:

Trust in the Lord with all your heart, And lean not on your own understanding ---Proverbs 3:5

I always get into trouble leaning on my own understanding!  And I look too closely at circumstances.  In the movie Soul Surfer (which I highly recommend watching), one of the the characters shows a picture to a group of students.  She asks the students to guess what this is (don't scroll down further than this picture until you've guessed):

Any guesses from you, readers????  What if I showed you this picture:

The first picture is the eye of the fly.  See what happens when we stop looking at a situation too closely and get the "big picture?"  It all becomes clear.  As humans, we can only see the fly's eye.  God sees the whole fly.  I have to trust that even though all I can see is the fly's eye that the fly is there and God knows EXACTLY what's going on with that fly!

In summary... I am back on full doses of my anti-dizzy medication and back to considering other options.  I checked with the Mayo clinic today and will very likely make an appointment there.  I'm not going there to have a procedure done or in the hopes they recommend a procedure.  I just want to get their perspective on my situation and their opinion on what my next step (if any) should be.  I am still sticking with vestibular rehab therapy (VRT).  I know that God sent me directly to VRT to get me so far ahead with my dizziness these past 8 weeks and I still believe it is invaluable.  My only concern is there may be something more causing more damage to my nerve that I'm not aware of.  The VRT is only going to work so long as my nerve isn't still under attack and continual damage.

Thank you for your continued love and support.  Please pray this dizziness will stop - completely, totally, 100%.  Please pray that God will give Jonathan and me peace as we consider visiting Mayo.  Please pray for details of that visit to be worked out so the trip is not stressful.  Please pray for Beau & Lydia as I am spending more time in bed again.  THANK YOU prayer partners.  Every time I ask for prayer I feel it - I feel overwhelmed with peace and support.  I know that is God working through all of you and I cannot thank you enough - truly and deeply from my heart.

And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.  ---Ephesians 6:18

Sunday, June 17, 2012


Then Jesus said to them all: “Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me."  ---Luke 9:23

I've read this verse numerous times over the last few months and although I felt like I understood it (in simple terms, give up my will for God's will), I still struggled with what this meant as a practical matter.  I'm a black and white kind of girl so I struggle with a lot of the biblical metaphors and how to actually apply them.  I had a migraine yesterday which kept me in bed most of the day and a little dizzy too.  In the 10+ hours I was in the bed, this verse began to make more sense to me.

I picture it like a 3-frame cartoon (I wish I could actually draw this, but I can't):
  • Frame 1 - I'm a stick figure standing there holding everything that is "mine" - my time, my family, my priorities, my agenda, my dreams, my schedule, my money, my resources.
  • Frame 2 - I'm a stick figure standing there with arms open wide with all of those things of mine laying at my feet, scattered on the ground.
  • Frame 3 - I'm a stick figure standing there, holding up a cross, which is covered in the words "love, joy, peace, patience, goodness, kindness, gentleness, faithfulness, self-control".
This is what I think Jesus meant.  We have to give up everything that is ours and take on everything that is His - every day.  Even the great apostle Paul said, "I die daily" (1 Corinthians 15:31).  In my life this means things like reading my bible instead of watching tv, spending time with my family instead of taking on more housework, being kind to people at WalMart when what I really want to do is scream at them to get out of my way (I've resolved this b/c I no longer shop in-store, only on-line with delivery right to my doorstep - pretty smart, huh?), lovingly and firmly telling my kids to do something (instead of raising my voice) even if though it's the 10th time I'm saying it, taking time to ask Jonathan about his day when he gets home even though I feel too pooped to hold a conversation, talking to my friend about Jesus even though I'm nervous about it, just to name a few things.

This all sounds great, but as I pray for God's help in these areas I get hung up on and have to ask for extra help because I tend to be a little sarcastic and very much have OCD, which tends to interfere with me living a more godly life!  While I'm praying through this I just picture God standing there with a comical look on his face saying to me, "Yes, I know you need extra help in these areas; I made you, flaws and all, remember?"  And I find comfort in that.  God has no expectation that I'll be perfect in carrying my cross, only that I set out to do it - daily!  I just have to put a little yellow caution tape around my quick-wit and OCD to make sure I pay extra attention in those areas.

You know what else?  You would think carrying a heavy, wooden, awkwardly-shaped, blood-stained cross would be really cumbersome.  But I find on the days that I'm diligent about carrying it, I feel much less burdened, more peaceful and much more rested.  It's a paradox.  Something that would seemingly act like an anchor brings great freedom and relief.

Surrendering my will daily isn't what I want to do, but I know that I have to do it.  It's the only way to a life that pleases God and therefore brings joy. (Take delight in the Lordand he will give you the desires of your heart. ---Psalm 37:4)

Thank you for continued prayers for my Meniere's disease.  I still firmly believe I am in remission but am still fighting through some lingering dizziness and some new issues (like all this sinus trouble I've been having causing bad headaches).  I am SO blessed to have come so far and I really do feel almost guilty asking for more prayer, but I am such a firm believer in it's power I will never stop asking for it.  One very specific request over the next few weeks: I am trying to wean off of the medication I've been taking for months.  It's very addictive medicine.  I've been on a really low dose but I still am asking for prayer that my body will easily adjust and I can break this bondage to this medicine that I feel (I am thankful for the medicine but at the same time I despise it).  Thank you, thank you, thank you - I will keep you posted on how this goes!

Tuesday, June 12, 2012

Passionate Pursuit

You, God, are my God, earnestly I seek you;
I thirst for you, my whole being longs for you,
in a dry and parched land where there is no water.  ---Psalm 63:1

Now that I am feeling SO much better, God is teaching me new things about life and not just how to deal with my illness.  So, I guess I’ll share those thoughts too…

I have learned a lot about my relationship with God through my relationship with our newest family member –

Gator came to us a month ago when he was 7 weeks old.  He was the twins’ birthday present. I did not want the dog, didn’t care if we had a dog, and quite frankly was a little put out by having another “thing” to have to care for.  But within three days I was completely smitten.  Not because I was drawn to him, but because he was drawn to me.  

All four of us (the human Gregorys) can be in the yard at the same time and Gator will be at my side following me, wagging his tail for me and not taking his eyes off me.  If I call him, he comes.  If anyone else calls him, he may come, he may not.  When I walk outside, Gator drops anything he is doing and comes running at full-speed toward me.  He doesn’t hesitate, doesn’t run away, doesn’t wonder why I’m there.

We installed an electric fence to keep him safe in the yard.  When he knows that I am on the other side of the fence, he will take the pain of the shock and get to me.  We bought a different collar (one with a bit more “zip” in it) – do you think he cares?  Nope – walks right through it if he knows he can get to me.  He doesn’t do that for any other family member; just me.  Because he was “breaking out,” Jonathan put more fencing in to secure one area of the yard better.  I walked around the corner yesterday and Gator had run through the shock (the newer “amped-up” version) and risked all to climb that fence and fall to the other side.  He made it over to get to me.

He is in passionate pursuit of me no matter what – if he’s playing with his favorite toy, eating, sleeping, gets shocked or risks injury.  

What if I pursued God in this manner – with reckless abandon, putting Him before all of my tasks, dropping everything to acknowledge His presence and behaving as though there is no other person around when He is near?  I know that’s what He wants.

Here is a God who loves me more than anything and I often put anyone and anything else before Him.  It’s just too easy to get caught up in life and give God the “hang on just a second” gesture while we finish doing what we’re doing.  When we see God or hear God we should take off running – passionately pursuing Him, no matter the cost or risk.

I long to dwell in your tent forever and take refuge in the shelter of your wings.  ---Psalm 61:4

Last night there was a terrible storm – thunder and lightening – the first rain Gator has seen since he’s lived with us.  I woke up at 10:40 to his cry.  I went out to find him shivering on the back patio.  With the wind coming from all directions he couldn’t find a dry spot.  I got his crate away from the edge of the patio, poured out the water, dried it out, put some towels in it, dried him off, gave him some love and went back inside.  I watched him curl up in his little crate and go to sleep.  Sometimes God doesn’t remove us from the storm but He always provides shelter and comfort.  We can curl up and rest when we’re in His shelter because we know He is watching over us and He’ll come when we cry out.

When I go outside, it’s usually to feed the dog, give him water, pet him or play with him.  It’s not to hurt him or scare him or derail him for no reason.  God wants our attention so He can give us our daily bread and living water, so He can show us that He is love and He is faithful.  He wants us to find our rest in Him.

Gator "resting"
My illness has taught me a LOT about priorities.  And though I am nowhere near perfect, I have made some changes in my life and what I consider important.  I don't run like Gator does every time, all the time, but I am certainly more aware that when God shows up I better pay attention.  Because of the months of time I've spent alone with God, I want to be with Him; I need that time; I cherish it.  It's so much easier now to stop what I'm doing and listen.  I believe if we all did this, life would be so much better and society wouldn't be nearly as hectic.  Most of the things on our daily task list won't make a significant impact to anyone in the days, weeks, months or years to come.  I hope we can all choose to passionately pursue God and find rest in Him!

Tuesday, June 5, 2012

Update on Waiting (and it's good)!

Let them give thanks to the LORD for his unfailing love and his wonderful deeds for men.  Let them sacrifice thank offerings and tell of his works with songs of joy.  ---Psalm 107:21-22

Here's how I read this verse:  Let Nicole give thanks to the LORD for his unfailing love and his wonderful deeds for her.  Let her sacrifice thank offerings and tell of his works with songs of joy.  ---Psalm 107:21-22

Two weeks ago I was in agony - not making much progress (in my mind) and wondering if I needed to pursue other medical options.  YOUR PRAYERS have been amazing.  The next day I started feeling better and felt peace to keep doing what I was doing.  As the Psalm says above, all I want to do is "tell of his works with songs of joy."  If I could sing, I would make an album right now.  Instead, I'm just singing to myself (and Jonathan and my kids and the dog... and anyone else who will listen) all day long.

The 4 main components of Meniere's are:
1) Fullness or pressure in the ear
2) Fluctuating hearing loss
3) Tinnitus (noises or ringing)
4) Vertigo

As you know, I have believed adamantly that God would provide complete healing from this Meniere's disease.  So, as of today here's my update:
1) Fullness or pressure in the ear - COMPLETELY GONE FOR 2 WEEKS - after feeling as though a balloon was being blown up inside my ear for the last 7+ months I have NO PRESSURE.  It feels AWESOME!  And b/c the pressure is gone, so is much of the anxiety... since it's the pressure that leads to the awful attacks.  I'm talking GONE!
2) Fluctuating hearing loss - COMPLETELY GONE FOR 2 WEEKS.  I've been exercising again (working my way back to running and riding the bicycle I received for Mother's Day) and can actually hear my iPod in BOTH ears!!!!
3) Tinnitus (noises or ringing) - almost gone but so slight that my brain doesn't register it.  I have to actually think about it to hear it.  Plus in the big scheme of things this has always been the least of my concerns with this disease.  And even though none of you will admit it, you probably all hear those "little voices in your head" now and then!!!!  :^)
4) Vertigo - No attacks for TWO MONTHS as of yesterday!!!!!

To say that all of this is praise is an understatement.  I honestly cannot express to you that this is the miracle I've been praying for - it's here!  God's complete hand of healing without pursuing additional medical treatment.  He gets the glory - that's it!

In addition to all of this - I started driving again after 2+ months and my dizziness/brain fog is getting better - my vestibular rehab therapy (VRT) is doing the trick.  I am pushing myself really hard throughout the day to do more and more "exercises" to get my balance back and get that nerve back to functioning.  And my therapist, Summer (who is also now a super awesome friend) is encouraging me and challenging me too (AND praying for me)!

I still need more prayer (I almost feel guilty asking for more after all everyone has done for me)... but I want to be 100%.  Even though I'm driving and doing much more, I've still got a ways to go.  Being in large crowds or big stores is still overwhelming. And I may not be able to drive every day if I'm feeling really "off" but any driving and getting out is progress and that's all I can ask for.  THANK YOU for your continued love and support - I have such peace and confidence and those are things that I could not produce in myself - they come only by God's hand.  Peace and confidence bring healing and progress.

So here I go singing again... (an oldie but goodie)
To God be the glory, great things he hath done! 
So loved he the world that he gave us his Son,
who yielded his life an atonement for sin,
and opened the lifegate that all may go in.

Great things he hath taught us, great things he hath done,
and great our rejoicing thru Jesus the Son;
but purer, and higher, and greater will be
our wonder, our transport, when Jesus we see.

Praise the Lord, praise the Lord,
let the earth hear his voice! 
Praise the Lord, praise the Lord,
let the people rejoice!
O come to the Father thru Jesus the Son,
and give him the glory, great things he hath done!