Each day brings choices

I wake up and lay still with my eyes closed until the world stops spinning.   Sit up very slowly so it does not start again; and so the day begins. 

It is different for all of us . . .

Each day when I wake up I make a choice – am I going to make the best of the day I have been given, or am I going to focus on the negative.  Trust me when I say there are days that I focus on the negative – those days are so long and so hard and it makes me miserable. 

Here is a little look at the days I decide to try and focus on the day that I have been given:

First thing in the morning I have to take things very slowly and hold onto the wall or use my cane for balance.  It’s funny because each day I want to jump up and just start moving around and do the things I want, but then the dizziness reminds me that I won’t be doing that today – maybe tomorrow, I never want to give up hope.

After doing the morning ritual I have to let the dog, Scrappy, out for his morning ritual.  This is never fun because I have to go out with him because we don’t have a fenced in yard and I try to keep him close by so I can stand on the porch and hold onto the rail for support.  Most of the time he listens – well, that is until my speech started to slur and sometimes he just pretends he cannot hear me.  Of course, this leads to me yelling at him in the meanest slurred voice that I can manage and he looks at me like “oh – you were yelling at me, fine I’ll come in”.  

Now that the morning ritual is completed for both me and Scrappy I am now tired and just need to sit down and get some energy before eating breakfast.

The rest of the day goes about the same.  Some days my dizziness is mild enough that I can do more things around the house.  I have never been the best house keeper in the world, but now it all depends on how much I am staggering around.  If I am to dizzy and staggering it is best to sit down and read or crochet or watch TV, but on the days it is mild I work up a frenzy and do everything I possibly can.  The bad thing about those days is that I pay for it later that evening or the next several days.  My body lets me know that I can only do so much now and that is not fun to accept.

I miss out on things now that I would love to take part in.  Maybe it is one of my bad days, or there is going to be loud music – I am very sensitive to sound and the loud music triggers my symptoms, or there is going to be a lot of walking and I don’t want to burden people because I am going slow, or, or, or, – there are many reasons that I miss out and I really hate them all!  Each time I miss out I worry that people are going to think I am antisocial, or just lazy.  Most of all I feel bad for, Mike, because if I miss out he does too. 

I am writing this all out because it is hard for me to understand, much less my family and friends, or people who have not met me, but are interested in Erin’s Dizzyland.  I thank each of you for your support and encouragement and interest.

Each day brings new opportunities and new challenges.  When I first started getting symptomatic I prayed so hard to go back to normal, to not feel the way that I do.  I have changed my look on that though; if I only want to go back to the way things USED to be than it will make each day even harder.  When I thought that way I was not able to face each new day with an open mind – I struggled very hard because I wanted my old life back.

Life now is definitely different – the challenges I face have made me laugh, cry, scream and fall down, but that is okay.  My mindset has changed so that for the most part I try to not dwell on the way life used to be, but to realize that this is my life now.  Some days it is easier than others and that is okay also. 

We all face challenges in our life and I think so much depends on how we face those challenges that helps us or hurts us.  When we refuse to see the good and only want things to go back to the way they used to be it hurts us.  I am not saying that we should give up hope – I am saying that we should be willing to accept change in our life and try to find the good in it.

My symptoms come and go; in the morning I am better than in the evening; when I am tired everything gets worse.  But I am alive – everyday I get a chance to live life to the fullest – I get to see and talk to the people that I love – I get to snuggle with my fur babies – I get to crochet – I get to laugh – there are things that I get to do, it may not be what I used to do, but it is more than some have and I will take that.  

Worry

There are things in life I worry about, but hopefully not to the point that it consumes me.  I worry that I will always be dizzy and have my head problems – there I said it – whew!  I worry that my speech will always be slurred because I am such a talker and have not been since it messed up.  I worry for my family and whether or not they are happy and healthy.  I worry about people in my church and how they are doing. 

Something I noticed as I typed that list is the order – I was first.  I know that is normal and all, but my worry for myself came before my worry for others, now I am wondering if that is normal?  I am sure it is, but let me get back to what I was saying.

Matthew 6:27 - Can any one of you by worrying add a single hour to your life? (New International Version (NIV))

Luke 12:25 - Who of you by worrying can add a single hour to your life? (New International Version (NIV))

Here is two different versus it talks about worrying – “can you add a single hour to your life?”  I can’t, can you?  This is simply my guess, but I think I am taking time away from my life by worrying.  I am not saying that I am suppose to live 99.85 years and by worrying all the time I am now going to live 86.4 years.  I am saying that with all the time I have spent worrying what else could I have done?

I could have called somebody I knew was sick and just asked how they are doing.  I could have done something around the house that I knew needed to be done.  I could have watched that new comedy that I have wanted to see and laughed throughout it.  I could have used that time for something good instead of worrying because it will not add to my life.

In the past year I have found myself worrying about something else though; something I don’t remember worrying about before.  I am worrying about offending others if I mention God.  I worry about telling somebody I will pray for them.  I worry about saying have a blessed day.  I worry about telling somebody that yes I am sick, but I have an awesome God looking out for me.

When I was last in the ER for my speech I was talking to a very friendly nurse, Jodi.  She made a comment about how happy I am for somebody in my situation and I did not think about it, but I did tell her it is because I know God is looking out for me.  She replied and said something similar to “Yes, He is good to look after us and take care of us.”  I was not afraid when I said this to her or when she replied, we were just talking.  What was the difference – why am I normally worried about what others might say or think, but it came so naturally talking to a total stranger?  For my friends who are preachers or who have more understanding about the Bible than I do – please, please feel free to answer this and help me with this – you might just help others at the same time!

Luke 9:23 - Then he said to them all: “Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me. (New International Version (NIV))

When I have the thoughts to tell somebody I will pray for them or to tell them have a blessed day, but I don’t do it am I denying God?  What if I want to tell somebody that I am fine even though I am sick because God is taking care of me, but I don’t do it am I denying God? 

I am not a theologian, I have not studied my Bible the way that I should, and I am trying to seek answers.  Maybe, in my search for answers, I can help others who have the same questions.

All I know for sure is that when I am standing before God I want to hear this:

Matthew 25:21 - “His master replied, ‘Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness!’ (New International Version (NIV))

Change

One of the wonderful things about life is how it changes!  Yes, I know that there are changes that we dislike and wish they would never happen, but I also think about so many of the changes are good ones.  We change from children to parents, from students to teachers, from being alone to finding a person to marry and spend our life with and so much more.

Changes can also occur in small little things that may only affect you for a day or a week or a month.  My newest change is spraining my foot.  This has not been a fun couple of days and has been rather painful, but I still have a choice.  I can wait for my foot to heal so that the conditions are perfect in my body again or I can learn to change for a few days.

Ecclesiastes 11:4   If you wait for perfect conditions, you will never get anything done (Living Bible (TLB)

I can be rather impatient and do not want to wait on the perfect conditions.  The perfect conditions for my sprain may be tomorrow or it may be next week, I don’t know, but I will never get anything done if I wait.  I am finding ways to work around this – I am cooking dinner sitting down instead of standing up.  I am actually asking Mike to help me which I normally do not do; I would normally try and do it myself. 

Maybe that in and of itself is my lesson during this time – to ask for help instead of being so stubborn I insist on doing it alone.  I am rather stubborn and you will see that the more of my blogs that you read – or you can just ask my Dad, he will tell you!

My tiny bleed

A lot of people love a good roller coaster ride.  That thrill of seeing it from a distance and then finally getting that seat.  The clickaty-clack of the chain pulling you to the top of that first hill – you are so excited, but you know you are going to scream when that ride makes the first drop!  The thrills of the wind whipping your hair around as you go around the turns and over the hills!  Then the final stop when the ride is over, you are still so excited, but a little nervous at the same time.  And you consider going on that ride again!

Now replace that roller coaster with your life; the thrill of seeing your life from a distance and how you plan on it going and how you plan on getting there.  The way you feel as you achieve those dreams and goals from your very first steps until your very last!  The thrills of laughter and joy along with sorrow and heartache – all things that you will find during your lifetime.  Then the final stop when the ride is over, did you live it the way you planned or did you let each day slip past you as you waited on “tomorrow”?

Philippians 4:6 – "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God..." 

Were you anxious to reach your goals or did you give thanks when you achieved them?  I think that sometimes we do and sometimes we don’t give thanks.  Today I plan on giving God thanksgiving!  I was told on January 14th that I have had a tiny bleed from my cavernous malformation.  When I first heard this news it is strange to say that I was thankful, thankful because a feeling I had felt and been told “no” about was confirmed.  I am still thankful that I have been told this news, because something cannot be prayed for if it is not known.

Philippians 4:13 – "I can do all things through Christ who strengthens me."

This is the part that I am now going to lean on!  I CAN do ALL things through CHRIST who strengthens ME!!  Why me?  Why does God care if I can do all things?  Because I am HIS child and he loves all of his children.  God does not plan on us to suffer, but sometimes we do and we have a choice to make at that time.  I have said for years that I do have a choice when things go bad – “I can laugh or I can cry.  Neither one is going to fix my problem, but laughing sure does feel better!!”

Even with my tiny bleed, even if things change in ways that I do not like, even if things improve and I am made whole again I CAN do ALL things through CHRIST who strengthens ME!  And he CAN strengthen YOU too!!

I want to give you a little information on a bleed and why this is a concern for me – this information is copied from www.angiomaalliance.com (the information in parenthesis is information I have been told by my doctors):

Receiving a CCM diagnosis upon experiencing symptoms is not a death sentence. The majority of lesions don't bleed and the ones that do normally don't explode like bombs. They may leak slowly, but this leakage can be enough to cause symptoms in the tight confines of the brain. There simply isn't enough room to accommodate foreign material such as excess blood. The result is compression or destruction of fragile nerve cells, resulting in the manifested symptoms.

The impact of a hemorrhage depends on its location in the brain (my main lesion is in my brainstem, but I have too many to count throughout the rest of my brain).  Those harboring brainstem lesions normally suffer multiple and diverse symptoms; “focal neurological deficits” ranging from double vision, nausea, balance problems, swallowing inability, and respiration difficultly among others.

Surgery is normally considered for those patients who have had more than one bleed (once you have a bleed you are more likely to have another bleed) in conjunction with worsening symptoms. Lesions such as these are normally considered “aggressive” and need to be removed, assuming the lesion is surgically accessible. While recovery from a hemorrhagic event normally occurs, many times a full recovery is not made. Each hemorrhage brings with it additional symptoms which may not resolve.

I hope this helps answer some of the questions as to why a bleed is such a concern.  Please always feel free to ask me any and all questions!

Think before you speak

Recently on Facebook I saw a post about 5 Things I Think Christians Shouldn't Say

5) “That’s not Christian . . .”

4) “I love the sinner but I hate the sin . . .”

3) “You need to surround yourself with some good Christian people . . .”

2) “You just have to do God’s will . . .”

1) “It’s all in God’s plan . . .”

I have a sixth item I would like to add to this list and it is regarding to my illness and something that a couple of people have said to me “If my faith were stronger I would not be sick” one even said that “It is because I am a sinner that I am still sick”.

I cannot tell you the amount of times that I have thought back to that statement “If my faith were stronger I would not be sick”.  This has hurt me deeply to have been told this – more than once – and I wonder if the ones who said it truly believe it?  How would they feel if somebody said those words to them?  Would they feel the support that they are looking for or would they feel slapped and knocked down?

When I was told this I felt slapped and knocked down.  I would pick myself up and dust myself off, but something later on would remind me of those words again and I would feel myself getting knocked down again. 

Matthew 17:20 says “Because of your little faith,” Jesus told them. “For if you had faith even as small as a tiny mustard seed, you could say to this mountain, ‘Move!’ and it would go far away. Nothing would be impossible.” (Living Bible)

Matthew 19:26 says “Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” (New International Version)

No, my faith is not as small as a tiny mustard seed because I have never moved a mountain, but with God ALL things are possible!  It does not say that some things are possible.  It does not say it will be possible when I say for it to.  It says with God all things are possible.

Now here comes the tricky part – here comes the part that stumps me because I am very impatient.  When I say I want something now – that is what I mean, I want it now, but you see there is somebody who has a plan much, much better than anything I could ever come up with. 

Jeremiah 29:11 says “For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope.” (Living Bible)

Who am I to argue with God’s plan?  Who am I to say that I should be healed because this is making my life uncomfortable and I no longer want to deal with it?  Who am I to say that I know better than God does?  Who does somebody else think they are to say that it is my faith that is keeping me sick and not God’s plan?

A woman at church has told me that I inspire her.  She said because I keep trying to live and do things that it encourages her to try and do things.  Maybe that is God’s plan for me is just to encourage this one woman!  Maybe God’s plan is for me to encourage others with health problems! I don’t know his plans, but I know that I have to wait and be patient on the Lord!

Isaiah 40:31 says “But they that wait upon the Lord shall renew their strength. They shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” (Living Bible)

It says to “wait upon the Lord”!!  Waiting is one of the hardest things for me.  I am a very impatient person!  But what a reward I have for waiting – they shall mount up on wings like eagles; they shall run and not be weary; they shall walk and not faint.  With my health I could never imagine running and not being weary or walking and not fainting, or in my case staggering.  God is not telling me this might happen, he is saying it WILL happen!! 

God has a plan and I have no idea what it is, but I have to be patient and wait on Him.  I am trying to wait; I am trying to be patient.  I am trying to not lie in the floor kicking and screaming and saying I want it my way and I am tired of waiting.  It would be so easy to do that, but then the perfect plan would not come to fruition! 

To read the article about 5 things I don’t Think Christians Should say please follow this link:  (http://reluctantxtian.wordpress.com/2012/05/17/5-phrases-i-think-christians-shouldnt-say/)

Do not be discouraged

Each morning on Facebook my Dad posts: a match the date scripture.   For Today's early bird "match the date" scripture, Joshua 1:9 (NIV), "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go."

Today his scripture just really struck me!  When you are facing health problems or uncertainty how do you stay strong and courageous?  How do you not let fear and discouragement consume you?  How do you not curl up in a ball somewhere and cry?!  I know that God is here with me wherever I go, but how can I show it daily?

This is Erin’s Dizzyland and I try to look through that perspective with my blogging and so here are my thoughts:  I am told to pray without ceasing (1 Thessalonians 5:16-18), but do I always have to pray for healing alone or can I pray to be used as I am?  I spoke with my pastor about this once and he told me that it is alright to do both!  For me when I first started getting sick and having problems and I looked at devotionals online, I saw some that were wonderful and very uplifting, but I wondered if they knew what it was like to face daily health problems.  The ones I saw were from people who were healthy.  I know that they have probably had friends or family who were sick, but there is a difference in writing from your own personal experience and writing what you see others going through!

 

When I am in public and people see me with my cane wobbling around or they hear me talk really funny can they see God?  Will just a smile let them know that something is good in my life?  Will laughter let them know that not everything is bad?  I think that some do realize that I have something and hopefully it is something they want!  I have been asked a few times about how I can be so happy with so many health problems going on.  Unfortunately I have never answered that question correctly until now!  I have always told them that I look for the good things and try to focus on that, and I am not lying when I tell them that.  But the correct answer is - - because I have God! 

 

There are days I am weak and in no way strong or courageous!  There are days when I want to curl up and cry!  That is human nature after all, but I REFUSE to give up!  I REFUSE to just lay there and let the world pass me by!  On these days my boyfriend, Mike, will encourage me to get in his spare power wheelchair and go walk the dog because he knows I love to get outside.  The birds that I love to hear sing are a gift at that time and it really lifts me up to hear them!  To see the fields and the woods and hear the wind whipping around is so refreshing – and it lifts me up to see it and hear it.  What lifts you up?  What helps you see the wonders and beauty around you? 

 

When I am out walking the dog I am not afraid or discouraged.  I am loving the feel of the sunshine and hearing those birds!  I may not have the strength or courage that I want, but I am better than I am when I am curled up having my pity party.  When I start feeling my spirits lift I pray.  The funny thing is during this time of weakness, I am not praying for healing or strength – I begin praying for those that I know are sick and struggling.  In that moment I am serving a purpose – God is using my weakness because our prayers are strong!  As I am praying I start looking for the good things and thanking God for those things and that gives me courage! 

 

Please do not ever give up.  Find something that lifts your spirits – a song, a long quiet drive, your children’s laughter or even a bird singing!   When you are feeling weak and you need encouragement go and find that thing that lifts your spirits and thank God that you have it and then keep thanking him for all the other blessings in your life and I promise that your spirits will lift and you will find a strength and courage through Him in that moment!

 

Not all of my blogging will be this deep, but that match the date scripture just really struck me today!  Sometimes it is so easy for me to dwell on the negative; I just wanted to share how I find that strength and courage again. 

 

God is good all the time . . .

The beginning . . .

In June 2009 I began having some strange health issues. It started with the feeling of being light-headed and then my left hand and foot would go numb. These sensations have made a bunch of things in life "entertaining" or difficult depending on my frame of my mind that day. I went to my family physician after the sensation lasted a few days.  She told me that it was nothing and that everything would return to normal soon.  After about a week and a half I was not feeling any better and went back.  She did blood work and told me my sodium was low and to salt everything I ate and in a week I would feel better.  I waited that week and still did not feel any better and was starting to stagger by this point in time.  I went back to her and she told me that she would send me to a neurologist, but I was "wasting their time". 

I was able to see the neurologist pretty fast and she immediately ordered an MRI and a CT scan. What she found is cavernous malformations.  I was told that Cavernous malformations are groups of abnormally tiny and larger, thin-walled blood vessels filled with blood that may slowly seep into surrounding tissue. The leakage of blood from the cavernoma may be more significant and cause what is called a hemorrhage. 
Since 2009 my symptoms have come and gone 7 times now.  The last times my symptoms started was in August 2012 and they have never gone away:  
~ dizzy spells every day;
~ my entire left side goes numb to the point that my facial muscles will droop;
~ my left side also has permanent nerve damage - I can barely bump myself and it feels as though I have been punched and then other times I can stub my toe against the wall and not feel that I did it;
~ my balance is not good at all - I tend to stagger a lot;
~ I am nauseous on a daily basis without medication;
~ I have headaches on a regular basis - several a week;
~ my memory is also bad, but not on a regular basis;
~ I am affected by sights and sounds that can set off seizure like episodes;
~ when I am tired my symptoms get worse.
I joke that at times I walk like a drunk version of Jack Sparrow from the Pirates of the Caribbean series so I use either a cane or a rollator to help me keep my balance now so that people don't accuse me of being drunk.  I am not mentioning my symptoms for sympathy or pity, but that others can know that they are not alone.

I had been working until November 2012 when my employer called 911 because they were worried about me.  The emergency room doctor suggested that it might be time to stop working and apply for disability and my employer agreed.  That is what I did and I am truly blessed because I was approved on my first try!  My condition is not something that will go away, when I was diagnosed in 2009 I only had 4 lesions in my brain and at my last MRI in September 2013 I have too many to count.

I miss working and would love to go back, but unfortunately now that is just not an option because my life is very entertaining now, but I will not give up.  I garden, hunt, fish and crochet.  Sometimes gardening might mean that I pull weeds for a 5 minutes and then just sit there for 20 minutes while I get energy back and then work a little bit more.  I love to crochet because that is something I can do sitting down so no matter how dizzy or numb I am I can still crochet.

 (This picture is from my main cavernous malformation.  You can see other small spots that are more lesions too. - 11/30/12)