Sunday, September 14, 2014

6 months!!

WOW!!!!  I can’t believe it’s been six months since I had Damian removed.  He is gone – hopefully forever.  The week before my anniversary I learned, again, the hard lesson that it is not always forever as a Facebook friend found out hers is back.

As I was preparing to write this blog I was thinking about what to put in and leave out and this appeared in my inbox.  I thought it was a great place to start:

Psalm 39:7 (NLT)
And so, Lord, where do I put my hope? My only hope is in you.

My hope has been in Him through all of this.  Through the  good and bad; through the pain; the stress; the confusion; all of the bumps; all of the joys; all of the hugs; all of the loss; all of everything!

I guess I should tell you where I am at:  my left side is still very weak; my hand has lost function and stays frequently in a fist; I still have drop foot and have to wear a brace to walk; daily headaches; lots of confusion; spacing out (told this is not seizures); TIA events; loss of balance; sensitivity to sound and extremely dizzy.

Now I have options- some days my favorite is to sit down and gripe about everything.  I do mean EVERYTHING!  You can imagine how much this helps; you got it, NOT one bit!  If anything it just stresses me out that much more.  This is a better option:

Psalm 98:4 (NLT)
Shout to the Lord, all the earth; break out in praise and sing for joy!

I have to remind myself sometimes to do this, but I think that is better than forgetting altogether.  I could get mad and say I’m going to walk away from God and do this on my own.  I could blame Him if I wanted.  But why - what did He do wrong?  He has shown me mercy, because it could be worse!!

Psalm 116:5 (NLT)
How kind the Lord is! How good He is! So merciful, this God of ours!

I want to be healthy again!  I want to sound like a southern girl again!  I want to crochet again!  I want to raise my left arm up shoulder height and then over my head!  I want to walk without a brace!  I am determined to walk a 5k in six more months! 

Where do you want to be in 6 months?  Do you want to be doing the exact same thing?  Do you want to start a new hobby?  Do you want to read that new book?  Do you want to lose weight?

What’s stopping you?  I have found many reasons to not do something.  I've even said I’m too busy to read a book – now that’s funny!  Let’s all band together to support – motivate – encourage – pray for one another.  

Friday, September 5, 2014


I was scrolling through FB today and somebody wrote about Job and how he served God in the worst time of his life just like he did during the best.  That just really got me thinking . . . I wish I were more like Job!!

I am going through one of my toughest journeys in life, but I am not alone.

Deuteronomy 31:8 New King James Version (NKJV)

And the Lord, He is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed.” 

Through this journey I have met some awesome people.  Lisanne gives me hope, Donna gives me courage, Dad gives me love, Mike gives me strength, Sierra and Cheyenne give me friendship, and Crystal reminds me God is with me.  The list goes on, but I can’t list them all. 

God tested Job in so many ways – he lost everything – his family, his wealth and his health, BUT he stayed faithful to God.  Job did not curse Him, he worshiped Him.  Job did not turn his back on Him, he prayed to Him.  Job knew God was there with him and did not abandon him. 

I hope to be that faithful!!  I hope to stop getting angry and yelling and instead praise God for my health!  I hope to stop complaining and pray for my blessings!  I hope to stop being so self centered and lift up others to God!  I hope to be a better listener; listening to God and my friends.  

We will all go through hard times in life, but we get to choose how we will respond.  I have chosen very poorly at times!!  Instead of crumbling, getting angry at everything around us we could focus on the good things – people who love us, the beauty around us, laughter, and God!!

Saturday, August 23, 2014

Comfort Zone

I decided to come out of my comfort zone and show a video about a day in the life with Cavernous Malformations.  No matter where you are in life, God can and will still use you if you let Him!!

If the video does not play please go to YouTube at:

Tuesday, July 15, 2014

I am my hero!

I am running
the wind is blowing through my hair
my lungs are pumping
I feel exhilarated . . .

Then I wake up!

I lie in the bed
feeling hopeful
thinking of running
and longing to do so.

Then I sit up!
Running is in the past;
or at least for now.
Brain surgery
has slowed me down.

But NOT stopped me.

Each day is a new adventure.
A new set of hopes,
and challenges.

It’s partially my choice,
my attitude,
my pain level,
but mainly my head.

Cavernous malformations;
a mind of their own.

Please be patient,
forgive when I can’t remember,
support me when I’m dizzy,
and be supportive each day.

Don’t rush me!

If you can’t support me
please leave me.
I won’t hold it against you
but I don’t need the stress.

I am my hero!

I am my motivator
I made it through today.
I’ll make it through tomorrow
and I’ll conquer the next!

Cavernous malformations
are all in my head;
today I did my best
now it’s time to rest!

               written by Erin W.

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!

Monday, April 7, 2014


Hello all - long time, no blog!! I am typing one handed, so please excuse any and all typos.

I am three weeks post op and life is interesting and full of surprises and challenges.

2 Corinthians 12:9 (NIV) But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

Do you want to talk about weak? We are all weak in one way or another, and I wonder how many times we do not want to admit our weaknesses. During my OT, my therapist, Allison, kept telling me “you got this; I know you can do it!” She was my cheerleader, she pushed me and challenged me and God is doing the same thing! This entire journey He has been telling me “you got this; I know you can do this!” Do you want to know a secret? He knows I can do it because He has my back. His power is resting on me through my weaknesses as long as I trust in Him and lean on Him.

At church yesterday, Brother Ken kept telling us that we are all uniquely made. I can’t remember what verse he used (one of the problems with brain surgery), but he is right. Could you imagine two of you running around? I would not want two of me running around – I talk too much by myself, I would hate for two of me to be talking peoples ears off. From what I understood, part of us being uniquely made is that we are all given unique gifts. We all like gifts and we all have one that is specifically for us and nobody else.

During this brain surgery journey some have talked about how positive I am. Now, I have no idea what my gift is and I definitely don’t know if being positive is a gift or not, but it has helped others. This makes me wonder that if every one of us just once a day bit our tongue and said something positive instead of that negative thing that popped up could we change our world? Our life? The life of the person you are talking to? Your church? It is so easy to be negative, but sometimes we have to think about being positive; don’t you wish it were the other way around? What if when we are on Facebook we shared the positive things and not all the negative? What if we shared the prayer requests instead of the gossip? What if we shared God instead of the world?

Here is a positive thought to leave you with – you are all beautiful, made in God’s image and uniquely made!! Brother Ken said “God has given you a gift – use it”!

Friday, March 7, 2014

Life changing

What would you do if you were going through a life changing situation?  What would you change?  Who would you talk to?  If you knew that something was going to happen next year, next month, next week or tomorrow what would you do?

My surgery is in one week and I keep thinking about these things.  My surgery is life changing even if nothing about me physically or emotionally changes!  I feel like I have really been thinking about what I would change!  One of the biggest changes I have noticed is that I feel closer to God because I am praying so much more than ever before.  I am talking to Him about the surgery, about my dog, about going to Wal-Mart, I just keep talking to Him about everything.  I hope this does not change after surgery and that it is not one of those attempts people make when you know something is coming!

     Proverbs 27:1 (NIV) Do not boast about tomorrow, for you do not know what a day may bring.

This verse is so true for me right now it is not even funny!!  

In one week I am having brain surgery.  Do you have any idea how many times per day this goes through my mind?  I have definitely asked the questions: am I bad enough that I really need this; is my family really alright with me staying at their house while I heal, I was just there in December; is Mike going to be alright if I look bad after surgery; is Dad going to be ok; questions, questions, questions!  I am sure this is normal, but I just keep asking them and praying!  My prayers are being answered!!  I know because even with all of my questions, I am calm and not worried.  I feel comfortable and content.

We have rearranged the house and are starting to pack.  I would rather prepare for the worst and not need it, then think everything will be perfect and it is not and things are not ready.  It may sound crazy to do these things, but if I have problems then I won’t be able to do these things after the surgery. 

I thought a week out might be a good time to give some information to my family and friends.  Some of this will be directed towards the people who are physically with me in Phoenix, but I thought it would be good information for my prayer warriors to have to maybe give some ideas on things to pray for!!

There is a website called that has some wonderful information about my condition.  They already have pages set up to help give ideas and support to patients and family members:

Caregiver Information - - for Mike, Dad, Rebecca, and Judy

Sunday, March 2, 2014

It’s not about you – it’s about Him

A week or so ago I saw a post by a woman whose husband had surgery and was on an emotional roller coaster which means she was also on the same ride.  People were giving her different advice and trying to cheer her up when one person commented – it’s not about your right now it’s about him.  I kept thinking about that and you know, I have decided that woman is partly right.  It’s not about you – it’s about Him.  It’s not about me, it’s about Him!  I hope you caught that – Him = God!!

My body is rebelling against me and making me have strange behaviors and strange speech, but how can I use that for Him?  I could fall on the ground and curl up in a ball and cry and beg non-stop to be perfect again . . . but that would not serve Him.  I could call everybody and tell them how pitiful I am and how my life is not worth living . . . but that would not serve Him.  So what can I do – how can He use me.

Luke 22:27 (NIV) For who is greater, the one who is at the table or the one who serves? Is it not the one who is at the table? But I am among you as one who serves.

Well, I can do that.  I can serve! 

Did you know...
- Abraham was too old
- Sarah laughed at God’s promises and was also too old.
- Moses stuttered and questioned God's judgment in picking him. He killed a man.
- David’s armor didn’t fit and was too young. He also killed a man & had an affair.
- Hosea’s wife was a prostitute.
- Amos’ only training was in the school of fig-tree pruning.
- Jacob was a liar.
- Lazarus was dead.
- John was self-righteous.
- The Apostle Paul spent his early life murdering Christians.
- Jeremiah was depressed & suicidal.
- Samson didn't wear a suit and had long hair.
- Noah got drunk.
- See more at:

God used imperfect people so many times throughout the Bible because they were willing to serve others and to serve Him.  That is my plan – serve God every day; it will probably never be something grand in the eyes of man, but I believe that it will be to God for the willingness!

Who will you serve today?  Who can you help?  Motivate?  Encourage?  How can you show that it is not about you, it is about Him?

Thursday, February 27, 2014

Call confirming surgery

Several people have asked me what the doctor said when he called to confirm the surgery.  I recorded the phone call so I would not have problems remembering it and typed up exactly what he said:

Dr. Hardesty Call confirming surgery

We agree that there is a small cavernous malformation in that front part of where your brainstem meets your spinal cord at the cervical medullary junction.  It is a difficult location to get to surgically, but it is surgically accessible.  Dr. Spetzler’s recommendation to you was that it really depends on your symptoms and your level of botherness, how much it bothers you.  If you want to go through with the surgery that’s reasonably invasive, but provides a good chance of getting that cavernous malformation out, we would be willing to offer that to you.

I mentioned that my current neurosurgeon said that I am in a lose/lose situation and continuing to get worse.  The Dr’s response:  We agree, if you are continuing to get worse I think it should probably come out. 

The way we would get there is, the lesion is on the right side just barely, but we would do an approach on the lateral side on the left to get the angle just right to get there. Because if we came on the right side we would have to kind of reach around and so we would actually recommend a left sided, what’s called a far lateral approach.  That’s a craniotomy at the base of the skull on the left side where we take off some of the bone, open up the lining, the dura, and then head towards the cav mal and take it out.  The only thing is that at times we have to take off enough bone that it destabilizes the area between the skull and the spine.  And at times people do require fusion later in life after this kind of procedure.  But we wouldn’t anticipate you needing it at the time of the initial procedure.  But the hope would be to not take off enough bone to cause instability.  This is just a warning.

I asked what is fusion:  that would be putting little screws and rod between the bones of the skull and the neck, kind of like a brace inside.  That would reduce your neck mobility a little bit in terms of nodding yes and no, but not totally.  Again, that is not an upfront thing that is something down the line that might have to happen.   

I asked that I have heard that a lot of time the symptoms you go into surgery with often get worse with surgery:  yes, that is something we warn everybody with a brainstem malformation about.  Over the first couple of days, usually the first three days, you can have some worsening of your symptoms because of the swelling around the area of surgery.  That does not mean that they are permanent by any means, but you can imagine that the normal tissue around where we operate gets kind of irritated that can cause some symptoms for at least a little while.  However, that does get better quickly. 

I asked what new deficits the surgery could potentially cause:  very similar to what would happen from a bleeding episode.  So sensory changes, weakness on the side of the body, perhaps worsening problems with your speech, or with your tongue function, or with your swallowing function, but overall I think the chances of any of that happening are relatively low.  I am betting that if Dr. Spetzler were to see you in clinic and quote you a number he would say you have probably between an 85 and 90% of getting by with no new permanent deficits at all.  

I asked when I can put my contacts back in (I hate my glasses):  in recovery as soon as I feel like it.

Every day that you don’t have surgery is a day you could have a bleeding episode even if it is unlikely. 

If you are from out of state, you fly in and get seen by us in clinic, you also get a new MRI and that MRI is used at the time of surgery for our navigation system – that’s kind of day one.  You go back to your hotel and then the next day or maybe the day after that depending on the timing, you come in early in the morning and that is when you are admitted for surgery and you have surgery that day.  It is sort of an all in one process; it all gets taken care of within a couple of days. 

I asked about Mike staying with me:  When people are in the ICU or on the hospital floor there is a couch in the back of every room and family members are welcome to stay 24/7, at least one of them.  It can be anyone important to me; they do not have to be family.  After 9 or 10 pm it is just one person, but during the day as many people as can fit in the room are fine. 

I think we can do you some good and get this out. There is no guarantee that your symptoms will improve, but certainly we can prevent them from getting worse.  But there is always a chance for recovery as well especially since things have been getting worse recently and not over those last five years there is always potential for recovery in someone who is young as well.

You come in and have your pre-op and surgery the next day, so that is two days right there.  You stay in the ICU overnight, that’s another day, maybe two days depending on how fast you are waking up and everything.  Most people will leave the hospital by a week after surgery.  I tell people to plan on being in the Phoenix area for seven to ten days.  Obviously if you were to have a new deficit after surgery or need rehab or there was a complication, God forbid (yes he said that), that would put you here longer. 

I asked how much assistance I would need when I go home:  I anticipate you would not need much more than you already do.  Again, unless you were to have some new permanent or temporary neurologic deficit and in that case you would probably go to rehab, until you are at that baseline level again.  Most people get back to their normal lives pretty quick.

He does recommend going to dad’s house after surgery for the help they can give me and Mike.

March 14th we are EVICTING Damian!! 

Saturday, February 22, 2014

Mike’s Perspective . . .

There is a woman whose husband has had brain surgery earlier this week and she is having a hard time emotionally right now.  I asked Mike to write to her from a caregiver’s standpoint and I liked what he wrote so much I thought I would share it as today’s blog . . .

Life with someone who has a Cavernoma is not normal. You learn quickly that everything is different now. Your other half cannot do like they use to. You have to keep in your mind that they want to do everything they did before. Now though they have a health problem slowing them down. Today they might be at fifty percent of their normal energy. While tomorrow it could be more or less energy. So you cannot really plan anything due to what will tomorrow bring, but you want to give them the best in life. When they wake up with a bad day you spend time wrestling with what to do today. You know they will want to go on today like every other day. So I have to remind them that you need to take it easy for their own health. How they respond can change many times through the day. You might get a happy response then an angry one next time. So patience is a key. Keeping in mind how they are feeling at that time. They can be depressed or not feeling good.

Knowing that they will see later on how they responded. When they do it breeds fear. Fear that they will ruin your feelings for them. To the point that you will want to leave them. Understanding that your feelings are not based on how they react all day every day.  So you have to reassure them you have not changed your feelings for them.

The physical problems are a unique experience. You get days where they may not be noticeable then there's bad days. On the bad days you may be a caregiver. This can range from steadying as they walk to trying to convince them to stay seated while you do everything in the home. If you are like me you enjoy being the caregiver when all of your life it was the opposite. Being in a wheelchair I have wanted to be independent so I understand the feeling of I do not want help. Even though you see the one you love and want to do everything to help them. It has ranged from hurrying to keep them from falling to getting things off the bottom shelf at the store. Learning the triggers to problems is a constant thing that can change. Like bending over makes you dizzy to certain sounds that trigger the effects. Yes your life may never be the same, but you see that they are more important than wasting money on movies. To me my other half is the most important thing. Wasting money on things that are triggers is not important to me. Making sure that they are safe and not put in the wrong situation is. I try to find ways to keep life interesting. Because you cannot live a life in fear of everything. Sitting at home scared is not a life. If you are adaptive you can see things like a simple walk can be enjoyable.

So you deal with the times where they are not feeling good or happy. I do not want a happy go lucky life where it gets boring. A challenging life can be more fun. So no matter what mental or physical situation she is in you need to realize what they are going through. Do not stress out. Keep in mind how would you react if you were them. You might act a whole lot worse to your loved ones then they do.

Wednesday, February 19, 2014

Waiting . . .

I mailed my medical records to Dr. Spetzler yesterday to see if he will be able to remove Damian (cavernous malformation).  Now the first of the waiting begins.

When I was at the post office I was so excited!  Mike even joked with me to calm down so I don’t hurt somebody in there.  I put everything in the envelope, sealed it up and went to pay to mail it.  After waiting in line I was getting my wallet out I realized I had forgot to put the money order in and had to get out of line and redo it.  Then I had to wait in line again. 

I think it is setting in more with me what this wait really means.  I am waiting to see if somebody is willing to do surgery on me, remove Damian who has been my constant companion since 2009 and start my new post-op life.  I am waiting to see if I am told there is nothing that can be done for me because of the dangers.  I am waiting to see what my post-op deficits might be.  I am waiting, waiting, waiting
Living with this cavernous malformation has been entertaining, funny, stressful, painful, and all sorts of other ‘fuls!  It has had its ups and downs, but for the most part I know when I wake up tomorrow what that day will bring.  In a way it is easier to know what tomorrow will bring versus waiting and worrying.  There – I said it – worrying! 

I really did not worry until yesterday when a wife put a picture of her husband on one of the support groups who is post-op and on a ventilator.  That worried me!  That scares me!  I know that it is different situations and different everything, but my mom’s final few days were spent on a ventilator and that was my first thought when I saw that picture.  People have talked about post-op many times, but nobody had ever mentioned that.  A few people said that it can be common after this surgery, but again, I had not heard that until I saw that picture.  Please pray for Greg and his wife as they are going through the beginning of post-op that he will heal and go home soon and learn his new post-op life!!

Deuteronomy 6:5 "Love the Lord your God with all your heart and with all your soul and with all your strength." (NIV)

I do love the Lord and I am really holding on to this right now!  How can anybody see what we see every day and not know Him and love Him!  Not just people who are sick, but people who watch the news, people who see how others behave nowadays.  Love the Lord your God with ALL your heart and with ALL your soul and with ALL your strength.  He is there for us, but you have to give Him what He asks in return.  As I sit here and now have new thoughts running through my head, I will not stop loving Him – no matter what happens, He is here for me!!  No matter if I have surgery in Arizona or North Carolina.  No matter if I am perfect after surgery or have deficits.  No matter what surgeon performs this surgery.  No matter what, I will NOT stop loving Him with ALL my heart and with ALL my soul and with ALL my strength.  When my physical strength may be weak and I don’t get out of bed the strength of my love for Him will not waiver and I pray yours does not either!!
I am waiting! 

Lamentations 3:23-25
New International Version (NIV)

23 They are new every morning;
    great is your faithfulness.
24 I say to myself, “The Lord is my portion;
    therefore I will wait for him.”
25 The Lord is good to those whose hope is in him,
    to the one who seeks him;

Friday, February 14, 2014

Valentine’s Day!

Happy Valentine’s Day to everybody!  I hope your day is wonderful and you surround yourselves by people you love.  Not just your husband, wife, boyfriend or girlfriend, but all the people you love today.

A young woman on Facebook said something today that I had not thought of before, but she is completely correct: 

"For God so loved the world that He gave His one and only son that whosoever believes in him shall not perish but have eternal life!" John 3:16

That's the real meaning of Valentine’s day! Who else would give their Son that you might live forever and ever!?

As you are giving everybody hugs and telling them you love them, don’t forget to tell God thank you for his Valentine’s Day gift also!

While we were growing up when my mom hugged us she made a sound that was something like “um um um”.  Even when we spent the night somewhere or when I called her from Venezuela she ended that phone call with “uh uh uh” – we did not have to be with her to know she was hugging us.

So from me to you – a long distance hug – UH UH UH!!  I hope you all have a wonderful Valentine’s Day!!

Tuesday, February 11, 2014

Confirming the need for surgery . . .

I went to see my new neurosurgeon, Dr. Deanna Sasaki-Adams, at UNC Chapel Hill on Friday and here is the update from that visit:

Before seeing the doctor I had a new MRI done so she could see exactly what is going on. Her intern came in and asked all the usual questions about what symptoms I am currently having from my cavernous malformations – what has been ongoing and what started at the beginning of January 2014.

The doctor told me that she believes I had a bleed at the beginning of January and that is what has caused my speech to slur along with a few other new symptoms. She also believes that in September 2012 when my symptoms suddenly got worse and I had to stop working that I had a bleed then as well.

(For those that are unsure what I mean when I say a “bleed” – the cavernous malformations are small groups of blood vessels that are not formed properly and will seep or ooze blood. When they “bleed” this tiny amount of blood pushes on the surrounding brain tissue and may bother that area of the brain causing deficits.)

The doctor told me that she is unsure if my speech will improve or not, but she wants to see me back in 6 weeks. She said if my speech is still slurred at that time than it is probably permanent.

Dr. Sasaki-Adams told me it is time to start looking at having the surgery to remove the cavernous malformation from my brainstem. From here on out the cavernous malformation will be referred to as “Damian”!

I asked the doctor how many brain stem surgeries she has performed and she said less than a handful. When I asked her what problems surgery with her could cause . . . well let’s just say it was not promising!! She told me for difficult surgeries she contacts Dr. Spetzler at Barrow hospital in Phoenix, Arizona and that she would have to do that with this surgery. She also told me that if I want to contact other surgeons who have performed this surgery more than she has that it is fine with her and she will not be offended. One of my aunt’s said that is very good that the doctor told me that, she said that speaks volumes for this doctor!

I am going to send my records to Dr. Spetzler as soon as I receive everything and see if he will evict Damian. Once he receives the records a member of his team should call me within the week to let me know what he thinks. Once he says yes they move pretty fast and the surgery may be scheduled as fast as a couple of weeks away.

I am praying for complete healing, but I am also looking at the possible outcomes. I am reading what others have said their deficits are before and after surgery so that I do not freak out if any of the negatives happen with me.

I have talked with my Dad and Judy about possibly staying with them after Damian has been eficted if I need rehab so they can assist me and Mike in anything that we may need. So as you pray for me during this time, please also pray for Mike – he is a great nurse and we are really going to put him to the test. Please pray for Dad and Judy twofold – if we need to stay with them as they care for me, or possibly even worse, if we get to come home after surgery for them to not worry and know that I am alright! Please pray for my brother and sister also that they will not worry!

Tuesday, February 4, 2014

Pantyhose . . .

Now, you men may not understand this unless you deer hunt, but pantyhose offer great support.  They pull everything in and can even give you a tan.

There are many aspects of our life that we can use support – other than just the pantyhose variety.  We can use support raising our families, studying for school, going for an interview, getting married, when a loved one passes away and so many other reasons!  But, how many of us really have a good support system?

There are so many different ways I have seen people encourage and support one another.  For me I put encouragement and support together because they sort of act as one. 

1 Thessalonians 5:11 - Therefore encourage one another and build each other up, just as in fact you are doing. (NIV)

A simple phone call asking how you are doing – and meaning it! – That is a great way to encourage and support somebody.  I have asked myself before when somebody asks “how are you doing?” – does this person want to know the truth or the polite answer.  The truth could be: I’m doing great; it could be: I am not doing good at all; it could be: I am having the best day ever; it could be: I’m really depressed.  The polite answer – I’m fine.  I can’t tell you how many times that I have simply said I’m fine instead of telling the truth and the person I was talking to just kept going with the conversation.  But, I love it when the person responds with something like – no really, how are you?!  This is AWESOME – this person wants to know the truth, that person is part of my support system, they are an encourager!!

1 Thessalonians 5:14 - And we urge you, brothers and sisters, warn those who are idle and disruptive, encourage the disheartened, help the weak, be patient with everyone. (NIV)

Encouragement and support can also come from strangers.  Have you ever been in public and you drop something and a stranger picks it up and hands it to you?  If you have or if you were the one that picked up the item, you just received or gave a small piece of support to somebody.  Have you ever smiled at a person in the store that looked like they are having a bad day – that is a little bit of encouragement and that could be the only smile that person receives that day!

In today’s world with Facebook and Twitter we also get encouragement and support from people we have never met face to face simply because of social media.  Do you remember when your friend’s, mother’s, best friend’s, uncle’s, nephew’s, cousin had surgery and you prayed for them and commented on the status or “liked” the status – yep, you got it – you gave some encouragement and support that day!! 

Romans 12:8 - if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy, do it cheerfully. (NIV)

We all need a support system, at some point in your life something good or bad is going to happen and that support system is going to come around you and cheer you on.   I hope you can build it from people that lift you up and not tear you down!  I hope it is people who you trust to give good advice and not be upset if you decide to go a different way!  I hope it is with people who will pray for you and encourage you! 

2 Corinthians 13:11 - Finally, brothers and sisters, rejoice! Strive for full restoration, encourage one another, be of one mind, live in peace. And the God of love and peace will be with you. (NIV)

Wednesday, January 29, 2014

What can you do?

Over the past year I have been dizzy, staggered around like a drunken Jack Sparrow – including the arms flapping around, been nauseous and on and on it goes.  I could use this as an excuse to sit around and watch TV all day and do absolutely nothing, or I can get creative.

The problem when I get creative though is that can be “dangerous” – just ask Mike!  Once he realized that my creativity sometimes was a bit too quirky he started helping me to find other ways to do things that maybe I won’t hurt myself doing them.

Over the past year I have crocheted quite a bit.  I made almost all of my Christmas presents and it was so much fun.  I had my first paid order last year and that was such a thrill for me.  I may not crochet fast, but I enjoy it all the same.  I also found out by accident that it works as sort of a therapy for my left side when it is feeling off.  My muscles in my left arm will tighten and draw up, but when I crochet it relaxes that arm and the feeling goes away after some time.

Mike has also taught me how to garden.  This is very entertaining because I have even killed cacti in the past!  We bought me a garden stool on wheels and I sit down and hoe for a few minutes and then rest for longer than a few minutes and repeat the process.  Mike never rushes me and he never tries to take over my rows either – he just works on “his” side of the garden and lets me go at my own pace on “my” side of the garden.  By going slow and steady I was able to make 10 pounds worth of green tomato pickles – that really made all that time worth it!  I am really looking forward to our garden again this year and can’t wait to take it slow and steady to get the job done!

I have also started to learn how to deer hunt and then how to prepare the deer to go on the table (I am being nice and not going into detail here).  I found out that the sound of the gun going off makes me very dizzy – I am sensitive to sound.  But I am also not that bad of a shot either.  So here I am doing target practice, I would get ready, take my shot, let my head spin for a couple of minutes, and then look through the scope to see how I did.  I am sure that is not the exact way that you are suppose to do it, but hey it works!  Mike and I were not able to kill a deer this year, but his step-dad did and Mike’s mom taught me how to prepare it to be canned or made into beef jerky.  I know there are people who don’t agree with killing animals and if you are killing for the fun of killing then I agree with you, but in my case we are putting as much of that deer as we can on the table.  When you live on a fixed income you learn other ways to help you stretch those pennies and killing and dressing your own deer is one way to do it, plus you get really lean healthy meat!

Mike likes to tell this story:  We had gone hunting and were sitting in the woods – I was sitting up Indian style.  He said he looked over at me and I went over slowly onto my back.  I will still sitting Indian style with my knees sticking straight up.  Mike asked me are you alright?  I replied yeah I am fine, why?  Mike told me that I fell over and I argued with him “no”.  Mike asked me what do I see straight in front of me.  I said “the sky”, and still said that I never fell over.  Mike asked me to look at my knees sticking straight up in the air.  I stopped arguing and asked him when did I fall over.  Then Mike told me that I started laughing and told him I don’t remember falling. 

I have also started using those electric buggies’s at Wal-mart when needed.  They should charge people money for the carnival ride that you are about to take when you take your life into your own hands and use one of those things!  Most of them pop into reverse when you stop – I have held my hands in the air and backed up down the aisle.  The bad thing is that Mike is usually holding on to the back of me and letting me pull him in his wheelchair so when I start backing up I may or may not run over him.  They should also give you a neck brace when you drive one of the buggies for the whiplash you are going to receive when it stops and throws you forward like you were just rear ended by an 18 wheeler.  You can also blame the buggy when you accidently bump into somebody, their buggy or their children when they keep cutting you off.  “Oops – the electric buggy wouldn’t stop” LOL

I have also learned that a great bunch of people go to church; and not just my church, but my Dad and Judy’s church and my uncle David’s church also.  At my church the people have learned what I can and cannot do and they help me to work with it and still be able to participate in activities.  That is one thing I worry about is missing activities, but the people in my church have helped me to still participate and I love that about them.  Over the Christmas holidays I was in Alabama and attended several services with my dad and Judy at their church.  Those people did not know me from the stranger at the store, but they helped me out also.  I hate to say that I don’t remember their names and cannot give credit where credit is due, but the ones who let me hold their arm while I walked around, or pushed in chairs so I would not trip that really meant a lot to me!  The people at dad and Judy’s church learned that I could not turn quickly to look at them to talk so they always came into my line of sight instead of standing off to my side and it is amazing how much little things like that make a person feel welcomed!  At my Uncle David’s church I attended his Sunday school class.  In the middle of that class I had a number of seizures and they stopped the class to help me.  There was a very nice man who kept talking to me in a very calm voice and held my hand to reassure me and that really did help and I never think I thanked him, but I hope he knows how much that meant to have his help.  After the class they texted my uncle throughout the afternoon to check on me to make sure I was ok – such small things are uplifting and I am so thankful to them for that.

Romans 8:28 (NIV) - And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Sunday, January 26, 2014

How it all started

I had asked what you might like for me to write about and one of the ladies asked me to write about how it began, so here is how my journey with cavernous malformations started.  I will say that this has been an interesting journey looking back.  I looked back at old doctors reports and found some information that I had forgot about. 

My journey began in 2009 with cavernous malformations, but I want to go back to around 1998 as a starting point.  In the late ‘90’s, I do not remember exactly when, I was having a terrible time with migraines.  I went to my family doctor who sent me to a neurologist who ordered CT Scans and MRI’s.  All of the results of these tests came back normal with absolutely nothing abnormal about them – so at this point I know that I did not have any cavernous malformations.  The neurologist told me that I was having tension migraines.  At the time I was taking four Tylenol every four hours and had been doing this for a couple of months.  The doctor told me that I could not take any form of pain medication for thirty days to get it out of my system.  He told me that with tension migraines there is an ingredient in Tylenol and most OTC pain meds (I don’t remember the ingredient) that can cause this type of migraine to become more severe and more frequent.  So for thirty long days I did not take anything, by the end of that time the headaches were mostly gone.  He told me to take Aleve for now on so that I did not suffer with the tension migraines any longer.

Fast forward to 2009 . . . oh wait, make that 2004, sort of.  In 2009 the doctor has in her report that I told her in 2004 I had “severe intermittent dizziness for half of the year”.  I don’t remember the episode in 2004 and I don’t remember telling the doctor about it.  So I will include this as a side note in my journey.

Now we really are going to go to July 2009.  I went to my family doctor because I was having episodes of numbness that came and went depending on what I was doing.  Also during this time I was having dizzy spells.  I was working at an emergency veterinarian and going to school to become a veterinary technician (veterinary nurse) and so these symptoms were interfering with both work and school.  The doctor told me that she did not think anything was behind it and that it should clear up.  I went back maybe a week to a week and a half later and told her that I was still having the same symptoms – they had now been going for well over a month.  My family doctor ran some blood work and told me my sodium was low and to start salting everything I eat and that within a few days the symptoms would be gone.  The next week I went back to the family doctor and I will never forget what she told me “I will send you to a neurologist, but you are completely wasting their time”. 

This is how I ended up going to see Dr. Stern at Mercy Hospital in Iowa City in September 2009 – she was a wonderful doctor and I really did like her.  During my first appointment she ordered an MRI to be done as soon as possible and then to go straight to her office to get the results.  Looking back I know it is sort of funny, but at the time I was not laughing at all.  When Dr. Stern came into the room she looked like a kid in a candy store.  She was so excited that she quite literally was bouncing in her chair and clapping – I am not joking – bouncing and clapping.  She told me that I have a condition called “cavernous malformations”, which she had never actually seen before, but she has studied about it.  She went on to tell me how she showed the other doctors in her group and they were all very interested in my case, oh and by the way, she can’t treat me because I need a specialist. 

Dr. Stern (neurologist) sent me to Dr. John Buatti, University of Iowa Hospital, an oncologist because he specializes in this condition and he would know what to do.  Anybody near Iowa City, Iowa I would recommend Dr. Buatti – he was very knowledgeable and really cared about his patients.  I called with a question once and HE actually called me on a Sunday afternoon from his home to answer my question.  How many doctors personally call you back, much less on a weekend, much less from their home – it popped up on my caller ID with his name and home telephone number!
In January 2010 I started having new symptoms that included more tingling in my left arm, more dizziness and imbalance.  The doctor always said dizzy and imbalance as two separate problems where I always thought that one caused the other.  The doctor said that I did have “some oozing” at the time of the new MRI in January.  

One of my classes took us to a parrot rescue. 
This is one of the episodes that happened that sent me back to the doctor in January of 2010:  I drove in to work at the emergency hospital and you had to walk through the treatment area to put your things in the locker at the back of the building.  I was saying hello to everybody and looking around when the veterinarian on duty looked at me and in her calmest, most monotone voice she could manage she told me to “SIT DOWN”.  I told her I had to get my things put away and clock in and she told me again to sit down.  I had no idea what was wrong, but I noticed then that several of the other staff were staring at me.  I sat down and she instructed one of the girls to call 911 and I started arguing immediately.  She told me I had a stroke and they needed to get an ambulance.  We argued back and forth and somebody brought me a mirror and the entire left side of my face was drooping.  I explained it was my head condition and that I would call my doctor the next morning.  She was satisfied with that since the rest of my body seemed as fine as it was during that time and she sent me home. 

During this time I remember that my balance was very bad – I would lean on walls or furniture to keep me upright.  I also fell down quite a bit during this time – I was talking to a friend and he said I got this strange look and fell straight over backwards; I did not even try to catch myself it was so fast.  When he ran around the couch to me I was laying there laughing my head off – I was so scared and worried I just did not know what to do and it came out as laughter.  This same friend was talking to me one day when I was laying down and he said my eyes rolled back in my head and my head fell sideways like I was falling down.  He later told me that it scared him when that happened – that I could fall down while laying flat on my back. 

My symptoms have come and gone six times until August 2012.  I had just moved to North Carolina in May and started a new job in August when a migraine hit that was absolutely horrible.  I called my doctor from Iowa who helped me find a doctor here.  I do not have a copy of these reports yet and my memory gets very fuzzy so we are going off my memory alone and not the notes to help me back it up. 

We drove to my new doctor who ran an MRI; I do not remember the results of the MRI other than I had more lesions that previous MRI’s had shown.  The doctor referred me to see a neurosurgeon regarding gamma knife surgery.  My understanding of gamma knife surgery is that it is one large dose of radiation that they aim at the one lesion causing problems.  After you have the procedure it will take two years to find out if it worked or not – by work – I mean to see if it has stopped it from bleeding in the future and shrinking it slightly.  I had questions, but the doctor could not answer them, he told me there is not enough research and he did not know.  I am glad he told the truth that he did not know and to this day I cannot decide if gamma knife would be a good option or not.

Since August of 2012 my symptoms have never gone away and I had to quit work in November 2012; this was a mutual decision between me and my employer after they called an ambulance to come and get me.  The emergency doctor suggested that I apply for disability and that is what I did.

In April 2013 the disability board wanted me to get a full neurological workup to see how I was doing.  They allowed me to go to my own doctor to have this done.  If you would like to be entertained go stand in front of the mirror and do the test that was my “full neurological workup” and I failed the test miserably!  The doctor told me to open my mouth and stick my tongue out - - wiggle tongue from one corner of your mouth the other and do this several times.  Now just for fun reply on Facebook at Erin’s Dizzyland and tell me what your eyes did during this test. ( My eyes go crazy blinking very rapidly, my head starts bobbing like the bobble head on the dashboard and I get very dizzy.  This is the test that got my approval for disability on my first try.

I hope this answered the question that I was asked and I extend the offer again, if there was anything you would like me to answer please ask.  Or just for entertainment name an off the wall topic and I will come up with something for a blog for you.

Thank you so much for reading all of this – I know this one was very long.  I hope you have a wonderful and blessed day!!