Monday, June 23, 2014

What you don’t see

I have been told numerous times how good I look.  I walk without my cane; for the most part, so I must be much better.  My speech has improved so I must be awesome!  Somebody asked me yesterday how I am and wanted the truth and not the generic “I’m fine”.  She then told me I should share to show where God has brought me to and where He continues to take me.


1 Peter 2:24 (NIV)

 “He himself bore our sins” in his body on the cross, so that we might die to sins and live for righteousness; “by his wounds you have been healed.”

Day to day life after surgery is different for everybody and even if you have an identical surgery things can be very different.  Here is my day to day life after having a craniotomy for cavernous malformations:

~  Nausea – I have medications for this, but there are some days it is horrible.  I am unsure if this has improved because the medication helps so much.
~ Ice pick headaches – off and on I get these headaches that feel like you have stabbed me in the head with an ice pick and a few seconds later pull it back out.  These headaches are extremely painful, but thankfully only last a short time.
~ Pressure headaches – these are different than the ice pick; with these it feels as if something is pressing against my head for an unlimited amount of time and not as severe as the ice pick.  These headaches can last for a couple of hours or an entire day.
~ Numbness – wow – this one is entertaining.  Around the surgery site it is still numb, but I’m getting some feeling.  At the edges of the numbness it is very painful.  The numb places will itch, but I can’t feel to scratch, so it drives me crazy.
~ Left side insanity – my left side hurts, is numb, shoots pain, feels weak, and is sensitive to the wind against my skin, and on and on.   This is the side that had been paralyzed briefly after the surgery.
~ Lump on back of head – it is not a literal lump, but that’s what it feels like.  I feel like I have something huge attached to the back of my head at the incision site.  It bothers me to lean my head against anything or to lie down at night.
~ Stiffness in arm and leg – My left arm and leg will become completely rigid, usually in my sleep.  The muscles are so tight that it hurts to the point the pain wakes me up.  Sometimes I wake Mike up if I hit him depending on how I’m laying.  I find this much funnier than he does.  Also, sometimes when I yawn or stretch it will make my arm and leg rigid.
~ Apraxia – this is newly diagnosed –
Apraxia is the inability to execute learned purposeful movements, despite having the desire and the physical capacity to perform the movements.  An example would be:  I want to reach out for something, but I can’t just do that.  I have to almost tell my body step by step – move shoulder, straighten elbow, open hand, etc.
~ Exhaustion – I started to write tired, but that’s not the correct word.  They told me in the hospital that I would be tired and need extra sleep and they were right.  Simple things like taking a shower are exhausting to me and I almost need a nap from that.  Even something like sitting in church is tiring and requires a nap.
~ Pain in head when laying down – when I lay the back of my head against anything it hurts.  I have to take pain medicine to sleep at night.
~ Forgetful – Mike added this one.  If I’m forgetful I don’t remember it!!
~ Freakish sound sensitivity – in my right ear my hearing for high pitched sounds is insane.  I heard a sound in Alabama that people kept saying I could not hear; but it was hurting my head.  Mike could hear it and then somebody else that had a stroke heard it and asked what that horrible sound is.  Maybe the strokes affected our hearing, but it made me feel better because I know what I heard and now somebody else did too.
~ Speech / tongue – my tongue is very weak and that is why my speech is messed up.  The right side of my tongue cannot hold the correct placement for my words to be correct.
~ Balance – My balance is still off and I still have some problems with dizziness.  I do not use my cane all the time, but I do take my rollator if I know there is a lot of walking. I stumble now even when standing still.
~ Confusion – when I am in a group with lots of different conversations or background noise I have a hard time concentrating.  I cannot play computer games and talk on the phone like I use to either.  Anything that requires me to focus on more than one thing is very difficult.  I will usually stop talking in these situations and just pretend to pay attention.
~ Weakness in left wrist and ankle – I sleep in a brace that supports my hand and goes to my elbow and wear a foot brace that supports my foot and goes to almost my knee.  When I take these braces off I feel very weak.  My wrist hurts to push a buggy (cart) around the store or to lean on it.  It is painful to get up and walk without the brace, but I have been told to not wear it all the time.
~ Missing things – I really hate this the most.  I miss things all the time and it makes me feel so unreliable.  I have had to miss things Mike and I really wanted to do because of any of the above things or a combination of things.

People have pressured me since 2009 when I was first diagnosed to have surgery.  I have said repeatedly the best thing to do is watch and wait because we don’t know what side effects surgery could cause. I am very blessed that things are as good as they are for me. 

1 Thessalonians 5:16-18 (NLT)
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.

Since I decided to write this several people have asked me to.  I am not whining when I write this or asking for pity.  Our bodies are amazing and the way we heal is awesome!!  God has been with me through every step of this journey and placed some wonderful people to help me.  Even when I get upset and have small pity parties I know that God is with me and I start to praise Him again!!

Tuesday, June 3, 2014

Blogging again!!

I am so glad that I am home and able to blog again!!  The past couple of months has been very entertaining and has had many ups and downs, but that’s ok because I’m heading in the right direction!

I want to say a HUGE thank you to Dad and Judy for letting us live with them for two months and for driving me to therapy.  I know it was not easy having us in your home for so long, but we really appreciate it.  We will miss all the wonderful food we enjoyed while we were at your house.  Mike says thank you for lending him the drawing tools so that he could continue doing something that he loves.

Thank you to Trinity United Methodist Church for making us feel so welcome.  You all made us feel so welcome and part of the family and that meant a great deal to us.  Thank you to Ron’s Sunday school class!  You all were so sweet to us and made us feel right at home.  We were curious about attending a different church and how it would be, but thanks to all of you for making it such a good experience!!

Thank you to those who came to visit Mike and me!  We had some wonderful visitors who made us laugh and enjoy ourselves.  It was nice to see the different people and to think of all the different ways we met and how our lives have grown. 

Thank you to our home church, First Assembly of God in Jefferson for remembering us in prayer!  We received daily messages from two of the sweetest girls telling us about you guys and keeping us entertained!  Thank you for your calls and texts letting us know that you were thinking of us.

Thank you so much to Kevin and Marisa for driving us home.  You guys went so far out of your way – literally – to help us and that meant so much to both of us.  We had a lot of fun talking on the ride home.  We will never forget Marisa’s reaction to the winding mountain roads either!