Crazy Lives Unplanned Surgery

The past week of our lives have been so totally crazy.  There are things going on that I simply just can't write about.  And I haven't done a very good job speaking about it either.  Definitely have shared ample amount of tears this week.  Life has been heartbreaking! The following is something I wrote earlier in the week.  I can never share things live very often.  My posts often sit in my blog for a few days before I publish them!  Sometimes I have to get my nerve up to post them!  Othertimes I have to pray and make sure I still think it is the right thing to write.  But from the following I think you can see some of what has been going on in my life and heart.

Tonight I lay awake with a very heavy heart.  I have sinus drainage going down the back of my throat!  Zines leg is shaking every 5 to 10 seconds.  We are still altering Chloe's meds with no real plan.   But those things are minor compared to what is going on inside.

Earthquakes in Nepal.  Riots in Baltimore.  And another tidal wave right in the life of my family.

I cannot even bring myself to explain the heartache right now.  It is so overwhelming at times, I'm certain that I quit breathing.  It's terrible when you must tell yourself to breathe!  Uncertain thoughts...I don't even know how to align the gazillion thoughts in my head.  Alone...there are no words to describe the depths of this feeling.   Fear...it is has consumed me at times.  Which means, I feel cold all the time!  My body even shakes at times.  Like having chills cold but I know all too well it is not because I am cold! 

I know all the good Christian answers.  Gods plan is to prosper not to harm.  My job is to trust Him.  God will supply all my needs.  Do not fear do not be afraid for God is with me.  I can do all things through Christ.  Yep, pretty sure there's probably not a Christian answer I don't have in my head somewhere.  

But let me just be real...I am calling to mind these promises and still sick with emotion!  And that's where I am tonight.  Claiming in my head the promises I know!  Trying to let them infiltrate my heart.  Covered up like it is 20 degrees outside.  Except for my one arm that is typing.  Reminding myself to breathe. 

Tonight I do not feel as desperate as I did the night I wrote that!  Tonight my thoughts are turned toward my sweet girl!  Chloe had a growth on her thumb that has been there for years.  But for some unknown reason in the past 6 to 8 weeks it has chosen to start growing.  It is causing much pain.  She saw a hand dr yesterday and will have surgery to remove it tomorrow.  And tonight, despite the extra medicine she's got going on, she's scared!  Killing my mama heart right now.  Medical stuff typically doesn't bother her.  She doesn't mind needles, unlike her mama!  I'm quite deathly afraid of them!  She doesn't mind going to drs, unlike her mama!  I'm quite terrified of them!  But she's not unlike her mama when it comes to feeling anxious and apprehensive over new situations.  And tonight the apprehension has emerged!  It might be a long day tomorrow until our arrival time of 1:30.

God's got this!  I'm not worried about the procedure.  I just don't like my babies to hurt and I definitely don't like my babies to be afraid!

Tonight I'm praying for a calm spirit for Chloe and skilled hands of a doctor and for this mom to remain calm and unemotional!  I'm praying for great wisdom into the tidal wave that came into our lives a week ago.  I'm praying for God to restore relationships and heal hearts. I'm praying for miracles in my family's lives, to miracles in this nation, to miracles in the world!   Here's a song that has been in my head lately!!  What Faith Can Do

I'm not brave enough...

Sometimes I hate it when God sends me a message!!  I know I should always be grateful but dog gone it, really??  A couple of people will understand why I say dog gone it!!  I read this in a devotional this morning!  

"We all have something. Most of us have lots of somethings. And you don’t have to broadcast them to the world. You don’t have to tell 30 people that you ate a whole pizza. But what would happen if you told one person about the real you and the real struggles you face?  Darkness can’t live in the light, and sharing our darkness inevitably brightens and lightens what seemed impenetrable and all-encompassing. And you never know who else is carrying the same burden. You just might find that you share your something and hear those powerful two words capable of flooding your heart and someone else’s with hope and encouragement: “Me, too.”

“A person standing alone can be attacked and defeated,

but two can stand back-to-back and conquer.

Three are even better, for a triple-braided cord is not easily broken.”

{Ecclesiastes 4:12, NLT}

What difference could “Me, too” make in your life today?"

Yikes!!  To share the real you with someone or a couple of someone's??  That's REALLY hard for me!!  Oh, I can share lots of facts and medical information with the world....that's easy!  I can even share some surface level emotions.  But to share the real me, the deep struggles, and what's currently going on in my heart...that's another story!!  And God has definitely been stirring up things in my heart lately!!  Maybe one day I will be brave enough to share them with the world!  Maybe one day I will be brave enough to share them with one or two!  Maybe....

I hear people all the time talk about feeling disconnected!!  I can't help but wonder if this is not the very reason why.  We are closed books!  Oh we let others see the surface...but the true us...no way!  But yet, that is where connection happens...when we share our true selves!

Last Sunday our pastor asked for us to come the next few Wednesday nights and fellowship meal together with others.  AND....he asked us to come on Sunday nights to a potluck meal!  For people like me, that sounds like pure torture.  Just sit and chat with people. Get to know others.  Connect with others.  I really don't do that very well right now!  Oh, I can ask lots of questions, and I can enter other people's worlds but resist greatly when people enter my world.  But the truth remains...

And what happens if we are brave enough to tell our story and our struggles to just a few??!!  What if someone offers us a "ME TOO" or we offer someone else a "ME TOO".  That would definitely remove aloneness and begin connections.  But...I'm not brave enough most of the time!!

When You Just Can't Take that Medicine that Made Life So Much Better

After our trip to Ohio with Chloe, we started Chloe on a new medicine that helped her physically a whole lot.  Probably for the first time in her life for a week and a half she was not plagued with pain!  She bounded around this house like a normal child.  She walked around our neighborhood without stopping at the hill and calling us to come get her!  She went up a set of stairs just like I would go up stairs.  I haven't seen that in ages!  Wow, this dr must have been right that there is an inflammatory disease going on that we haven't pinpointed yet.  But how exciting for her to feel better.  Even someone from church commented to me about how well she looked and how quickly she was moving.
But then...

The side effects of the medicine hit about a week and half later.  And it has not been pleasant at my house.  It has wreaked havoc with her emotional status.  I do believe that raising a child with emotional problems is probably one of the things that make me depend on God the most!  Right next to having a husband with MS.  But sometimes physical health issues are much easier to deal with than emotional health issues. At least with physical issues, there are things we can do to try to alleviate.  But with emotional health, often it leads you feeling totally helpless.  As a mom, it is heart wrenching to watch your child suffer with severe depression!  Often times, no words I say bring comfort or no words of truth make a difference.  There is absolutely NOTHING mom can do to make your heart feel any better.

We have spent the last 4 weeks weaning her off a medicine that made her feel sooo much better!  And for this mama heart, it is killing it!  To have had the opportunity to know what it is like to feel so much better and then to have to come off of it because you literally can not function in life makes me so very, very sad for her.

So....we have one more week and would be done with the medicine.  But on Friday, she and the psychiatrist made the decision to up some of her psychological medicine to see if it would counteract the drug that made her feel better.  This mama was not sold on the idea that this was the best idea.  But trooper Chloe was willing to give it a try.

By this morning, Chloe was back to not moving very well.  But we went back to the full dose of the new medicine and the upped dose of her psychological drug...so the verdict is to be determined.  If it doesn't work, we have four weeks of absolute hell to get her back off the medicine.  Needless to say, it has been quite a difficult season!  But God is good and His strength is perfect in our weakness.

We would appreciate prayers this week as we wait to see what happens with the medicine changes. Pray especially for me that my heart would be calm.   I actually have much much apprehension!  Just based on what we've been through the past three weeks or so...it may make me insane to repeat it.  

Just keep saying, just keep saying

As I shared in a previous post last week, my cry box got turned over in a big way!  It's been a very long time since I cried that much and that long!  So I wrote a post about it...When the Crybox Got Turned Over.

However, I still struggle with crying.  I found that after leaving the massage therapist office and began to think over all that had happened, my anxiety level begin to rise.  And my mind can play all kinds of tricks with my emotions and thought patterns.   One of my most famous tricks, if I feel like I have let someone down or if I have upset them, I like to hide for awhile.  Avoidance is a good thing.  Or...if there is a controversy that needs to be addressed, I like to hide then as well!  There is no guessing where Chloe gets this trait from!  So...I began to get myself all worked up over going back and getting another massage.  And I told myself so many statements that it was unreal!  And I found so many excuses that I could come up with for the next time my massage was scheduled so I could "hide".  It was really thought consuming!  And I HATE for thoughts or situations to consume me!  It was going to be a long two weeks until my next appointment and I was going to be all in a work by the time I got to that appointment.  This whole situation was just crazy!!

As God likes to give us good gifts, God by some miracle, allowed me a do over on my massage.  First the massage I got was of no help because I was so busy trying not to cry that there was no way a muscle in my body relaxed.  Second, I really didn't want those crazy thoughts consuming me for two weeks.  So two or three days later, I got a do over.  And I was pretty nervous to go back in, I gotta say!    Mr. T said, Karen, "Do you believe what you say?"  He went on to say if you really do believe what you say, then there should be no bad thoughts or anxiety about coming back here.  Yes, yes I know this to be true in my head!!!  But in my crazy world of emotions and thoughts, I guess I was not believing what I said.  Or maybe I just needed some reassurance that tears were okay!

So as I pondered this whole escapade that really and truly wasn't nearly as big of a deal as my brain made it out to be, I had to think...if at first you don't believe, just keep saying truth over and over!  Eventually truth will sink in.

I tell Zine this all the time...replace lies with truth.  And when the lies in your head and thoughts reappear, just keep saying truth in its place.  Reminds me of Dory in Finding Nemo!

But instead of saying just keep swimming....I have to say just keep saying just keep saying truths!  So...if you find yourself in situations where you are struggling to believe truth...then just remember...just keep saying just keep saying just keep saying truth!  Eventually, it will make it 18 inches from your head to your heart!

Just another Saturday night job!

On Saturday evenings, I spend about 30 to 45 minutes filling up Zine's medicine containers.  I fill two weeks of containers at a time.  So many of his meds we have to order refills in advance so they can order it.  So...we must plan ahead.

For a long time, Zine would just carry bottles around with him.  But as MS has progressed, so has the amount of drugs he takes.  And...we have arranged medicines at different times to give him the best help during the day time hours as well.  So it began to get hard to keep all the medicine straight as to when you took what when.  Also as Zine's fine motor skills have declined, it became harder and harder for him to get his pills out without dropping them.  So...it took us months to come up with a system for how to make it all work smoothly but I think we finally have something that works!  Geesh!  Some things should not be so hard!

On Saturday evenings, I fill up the containers.  If a refill is needed then I take a sharpie marker and write on top of the medicine bottle the date that the refill needs to be called in.  We always want to give a three day in advance notice to ensure we have meds when needed.  And then on the side of the bottle I write the day and time that it needs to be input into the container.  I found that even after the refill, it was sometimes hard to know where I left off putting medicine in the container.  So a note on top of the bottle and a note on the side of the bottle seems to be working!

Zine puts the refill dates in his calendar and he is responsible for calling in the refills!  Or rather scanning in the refills!  I get a text message from pharmacy when the medicine is ready.  I pick it up.  And on Saturday evenings, this is what I do!

I would never swallow all these pills!  It would take me a gallon of water to get the morning meds down.  Swallowing pills is not a gift I have been blessed with. I must swallow them one at a time and it is quite a difficult task!  But Zine...thank goodness he has been blessed with the swallowing gift!!  I laugh at this next statement but it is really not funny...When Zine was on his antibiotic, I literally had to strategically place all the pills in the morning container very carefully or they would not fit.  So it was not a matter of dropping the pills in the square.  They had to be strategically placed so that they would all fit!  I guess sometimes it's better to laugh than cry though!

And I assume if we get many more medicines, I will have to get some more containers and we will use two containers per one week!

Truly, after numerous frustrated discussions between Zine and I, I am so grateful that we have finally figured out a system that works for us!  It has taken awhile to perfect, but it's working at the moment and for that I am very grateful!!!

When the Cry Box Turned Over

Can I just say that my cry box has been turned over!  And my family will tell you I hardly ever cry!  I actually absolutely hate to cry!  And even worse than crying is to cry in public places!  Yes, I have a friend that cries at everything...not me!  I've prided myself on the fact that I don't cry.  I don't cry at movies.  I don't cry when I read books.  I can stand beside a friend who is crying non stop and not cry.  Just not my personality...but then on occasion...those tears start flowing and then they don't stop for awhile!   That happened today!  Uuughhhh!!!

As I was just telling Zine about my complete come apart today, we discussed the reasons why.  After I voiced them to him, well, no wonder I cried today.  Not to mention the obvious issues of living with a husband who has MS and on chemo and a daughter who struggles with depression and muscular dystrophy, here is what the past 24 hours looked like...

--Found out Chloe is likely going to have surgery to remove a growth on her thumb that has grown quickly over the past three weeks.  And it is causing her much pain.  Pediatrician scheduled her with an orthopedic hand doctor.
--Took my TMJ splint to be resurfaced.  Went back into town several hours later to pick it up only to find out that in the process my splint was warped and no longer fit my mouth.
--Had to have new impressions made---which I absolutely hate!
--Have to purchase a new mouth splint!
--Got a phone call that my dad had been taken by ambulance to the hospital.  He's fine now!  He got some medicine in a doctors office that turned out he was allergic to which caused a HUGE scare.  Worried so much about my mom in that process, but God was good and sent people to care for her, but know she was so scared.

All that in a matter of 5 hours yesterday!  Tomorrow, Krisann has an allergy dr. appt which there are no words to say how much I dread that!!!  It's going to be traumatic to the bazillionth degree!  Zine has to go to The Cancer Center tomorrow for an appt.  Thank goodness, it's not chemo time yet!!  Then Krisann has a follow up with her ENT from where her ear drums ruptured.  So I'm sure I'm dreading some of that tomorrow as well.

But for today, I was looking forward to going and getting my massage!  I am a HUGE believer in them!  Some weeks, they are what keep me going.  And they definitely help reduce the knots in my overly stressed shoulders and neck!  But when I got up this morning, I was quite teary eyed.  On and off all morning I struggled to hold back tears.  And then...getting my massage...the cry box turned over.  Uuughhhh!!  I tried so hard to not let the tears roll down my cheeks!  I kept blowing up to try to dry the tears!  But the tears rolled.  And when they started rolling, I couldn't make them stop!  Poor Mr. Tony!!  Tonight I feel so sorry for him.  I"m sure he was like what do I do with this woman who is falling totally apart right here!   Needless to say, I left his office still crying.  I sat in the driveway for about 15 minutes simply trying to pull it together!  And ever since then, the tears have flowed freely on and off!  Yep, no make up left to wash off tonight!

Took Krisann to watch her have her first practice as Fantasy Jr.  Yep felt the tears coming up in my eyes as I watched the sweet girl!!  Had to go to the bathroom for a minute!  Thank goodness, they didn't just roll and roll while I was there!!!!

My eyes burn!  My eyelids are swollen.  I am tired.  I am fretting over tomorrow.  But I was looking for a picture to add to my blog so that when I post it, there will be an image attached and not this little tool icon.  Think I should take a blogging class so I could learn how to really do this blogging idea!  And here's what I found...

I just fell in love with this quote.  Crying makes me feel weak and undone!  But if there is anything I can share with others as I traverse this path of life we unexpectedly found ourselves on...I want people to know it is okay to struggle.  It is okay to cry.  It does not make you less of a person or less of a Christian.  It is okay to not like where you are in life!  It is okay to be sad!  You can do those things and still be a Christian.  A good Christian.  If I struggle with this idea, I know others do too!  So...I want people to see me and know that I have a strong faith, I love Jesus, but definitely have emotions that overflow sometimes and that's okay!  So if you think faulty thoughts like I do, please be encouraged!  You are not alone!  And I do NOT think you are a "bad" Christian or a weak person!  

Drugs are a blessing and a curse

Drugs...do you love them or hate them??!!  I think I do both!!  Sometimes I love them and sometimes I absolutely despise them.  

After our visit to Ohio, we started Chloe on some new medicine.  The first week she took it, she felt much better.  The second week she took it I could tell she was better.  Then the third week rolled around, and the negative side effects we had so feared kicked in.  And those benefits we had seen, have definitely been overrode by the negative side effects!  

Raising a child with clinical depression is a very difficult and challenging experience.  And we feel like we have managed that better in the recent months than ever before.  It has been a fine act of balancing medicine, psychiatry appointments, and counseling.  Not to mention the many hours of counseling mom and dad and siblings get to do!!

I find it amazing how so quickly, all that hard work can be wrecked by negative side effects of a drug!  As a parent, I never want to make a quick decision based upon fear.  Nor do I want to continue to give medicine that is going to completely wreck her emotional balance.  So, I think I have learned to weigh those decisions carefully. At least, I like to hope I do a good job of not going to one extreme or the other!

Today, I made one of those decisions.  I emailed the doctors in Ohio and let them know that I feel like medicine is causing us great difficulty!  Now, I cross my fingers and pray that they will change the course of medicine tomorrow.  And I hope and pray that once this medicine is out of her system, it is not a long road to get her back to healthy place emotionally, but rather an immediate return to where she was.

Wondering tonight what my plan might be at this point tomorrow night.  And I wonder why my neck and shoulders hurt sometimes??!!

But I want my sweet girl back!  Sweet girl that remembers things well, that is motivated to do school work, that is not in her room in bed all the time, that somewhat likes people again, that doesn't hate me when I take her out of this house, etc.  

So sad, when I can't fix the problems!  So glad that God gives much grace and wisdom!