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Wednesday, June 4

One of the joys...

One of the joys of having your autonomic nervous system out of whack is the constant adrenaline surges that allows you to function at a ridiculous pace for way too long.  The problem is that it can stay that way until you crash.  Adrenaline surges from what I can understand are a natural part of the condition but it is exacerbated by external stressors.  The body over responds to stress by placing itself in the flight or fight mode.

This past 2 weeks I have been riding the wave of an overdrive.  I worked 4 days in a row.  My last day of work I was up at 5 am and had to work all day and pick my mom up at the airport at midnight.  Instead her flight was delayed and we didn't get home till 230am.  I got a whopping 4 hours sleep before having an appointment and then coming home and spending the next 4 days packing and moving to a new apartment (No packing was done before hand because I literally was too tired).  When I woke up Monday am I found my new apartment was flooded and had to deal with that before work.  Tuesday was a day to take my mom and spoil her but I could tell I was in a crash mode.  When I crash, I crash.  Not much can get me going and that is extremely frustrating for me.  I am a go go kind of person.  I don't do well with down time but my body has forced me to give it down time.

Today after dropping my mom off at the airport I came home and made it as far as the couch.  There are boxes to unpack and things to do but I can't keep my eyes open.  The utter exhaustion is painful.  I have a sleep study coming up soon where they will monitor my sleep over night.  There are 2 thoughts that they have.  One is that my body is either in the light sleep mode or in the Deep REM mode but not cycling through the stages of sleep which is necessary for your body to renew itself and feel rested.  At work I do a sleep apnea study on all my new patients as part of a standard protocol.  As I was doing them the first few times, I realized that I answer very high on the risk factor scale for sleep apnea.  This brings me to the 2nd thought and reason for the sleep study.  It is not a typical sleep apnea where the airway is obstructed.  Instead it is the brain not telling the body to breath.  This is a condition called Central sleep apnea and is found in EDS patients.

The hardest part for me of everything I face is not the chronic pain, nor the issues with losing weight, or the many other problems you can face, rather it is the chronic exhaustion!  And unfortunately many of the meds that they are trying or planning to try to help me cause the exhaustion to be worse.  Even now I am so tired, I can barely proof read my writing to see if it makes any sense...so if it doesn't I am sorry.

Tuesday, May 27

A case of the rare conditions!

So I come from a relatively healthy family.  No one has chronic issues or any major surgeries.  My family sometimes says, "I took one for the team!"  Well it is one thing to deal with a health issue, it is another to deal with a rare health issue.  Or how about 3 rare health issues?  Well that would be me...I drew the short stick literally and figuratively.  Or as my good friends Rob and Robyn say, "Only SaraJane!"

The main condition is Ehlers Danlos Syndrome which is a defect in the connective tissue.  The second condition which often comes out of EDS is Chiari Malformation which is what led to my brain surgery.  And now I have been told I have Dysautonomia.  Dysautonomia is a malfunction of the Autonomic Nervous system (ANS).  Many EDS patients have this for whatever reason and they really don't even know the cause of dysautonomia.  And to top it off all 3 conditions are ones that most doctors have no clue about.  At best they respond with, "Oh I remember that from Med School but couldn't tell you anything about it."

The Autonomic Nervous system (ANS) controls aspects of our body in a way we don't even think about like respiratory or heart rate.  It does it "automatically."  At least it is supposed to.  But when it malfunctions it can cause many different types of problems.

To give you a better understanding here is a little Anatomy and physiology.  The ANS is made up of 2 parts.  The Parasympathetic Nervous system (PNS) and the Sympathetic Nervous system (SNS).  The SNS is known for it's response to stress also known as the "Flight or fight" response.  The PNS is known for the Rest and Relax part of the body.


The above graph gives you an idea of what each area effects.  In Dysautonomia the Sympathetic system goes into overdrive and our body produces too much adrenaline.  This response makes our body think it is in stress mode all the time and therefore shuts down all "unnecessary" functions so it can mount up a response.  So when this happens you find yourself wired, having shaky hands, your digestion shuts off, it stimulates glucose, epinephrine and breathing while also making the heart work too hard and increasing your heart rate.  One's body is not intended to stay this way indefinitely.  In my case it is in this state too much of the time.  

Finding out this diagnosis has made a lot of things make sense, especially over the past year.  I have lost 20 + pounds and am now down to 98lbs.  I am lucky to eat one meal a day now because my body doesn't tolerate food.  My job produces enough stress to kick in the adrenaline so I am able to function at work but then I can't turn off the adrenaline so I can't sleep at night.  By time my 3 12 1/2+ hour days are finished I literally can barely function.  This is just the tip of the iceberg.  Most people have no idea that I deal with this on a day to day basis.  I don't "look sick!"  But I feel exhausted and in chronic pain because my body can never rest.  My body doesn't get the opportunity to rest and rebuild itself.  

Being a nurse and understanding the way the body works, I recognize this can only last for a while before my body says enough is enough!.  I often wonder, how long do I have to figure this out?  Can I have a family like this?  How do I even dream of getting married knowing I can't ask someone to "take" this on.  It's not like I am wheelchair bound or can't function but I sometimes feel I can't function well.  My biggest fear is being a burden.  I have watched many people before me who have given up the fight and it doesn't end well.  Giving up leads down a very slippery slope.  Fighting is the best option I have in front of me and thought there are days I want to give up, I have a fighting spirit which does not allow me to give up.  This is where my absolute dependence on God comes in.  I honestly don't know how people go through tough things without having God to talk to, the support of a church body (as human and broken as it may be).  My relationship with God and my church family, Calvary Chapel North Jersey, were an incredible support system for me through brain surgery.  Even now as I battle this, they are often checking on me from 1500 miles away.  

Some may look at it as a crutch.  I would say it might look like a "crutch" but it takes more strength and faith to believe in God and trust him to get you through a difficult time than it does to just say, ah there is nothing out there.  It is easier to just say there is nothing, there is no reason to fight and there is no one standing by my side daily while I hurt or can barely get out of bed from exhaustion.  I however, find peace and strength in my pain and my exhaustion when I am talking with God and reading his word.  I see in the Bible, not perfect people, but people who were adulterers, robbers, liars, broken, sick, wounded!  God didn't say go figure this out and then come to me when you fix it.  No He lifted them up to a place of honor and called them His children.  He says he will never leave us or forsake us and that He is walking each step with us.  It was the proud who turned there back on him and spat in his face that He said will have no place with him if they continue.  

I don't write this post so that you will feel sympathy for me or say, "poor SJ."  I don't write this post to shove God in your face if you don't have the same viewpoint.  I write this post to hopefully explain how I get through a very difficult situation.  I write this post to share where my strength comes from.  My hope is that it won't be a place for me to gripe and gather sympathy but rather a place where people who want to understand my battle more can understand.  A place where people who have a battle of there own can find encouragement for there own battle.  I write this so that maybe there is someone out there, who is dealing with the same problem but have been told by doctors they are "crazy" because the doctor simply doesn't know what to do, who will find information and to see they are not alone in there battle.  


Want to read more about any of these conditions?

Dysautonomia
http://www.dysautonomiainternational.org/page.php?ID=34

EDS
http://www.ednf.org/what-eds

http://www.ehlersdanlosnetwork.org/

Chiari Malformation

http://www.mayoclinic.org/diseases-conditions/chiari-malformation/basics/definition/con-20031115

http://www.chiariinstitute.com/chiari_malformation.html

Saturday, May 24

Meet Zateo

Zateo over the past 9 months
Zateo is my precious yellow lab that I got this past September.  I chose the name Zateo because it is a Greek word meaning "To seek."  His job was to be a search and rescue dog and honestly I am still hopeful that may be the case.  However, right now he has a greater mission, to help me!

I am not fully comfortable saying he is a service dog for me because that usually means you are blind or handicapped to most people.  That is not the case with me.  I still manage to work a full time, physical job as a nurse and try to be active.  But I am also coming to the reality that there are some things that I need help with and I don't have a husband or family that I can rely on here in Texas.  So right now beyond providing emotional support, Zateo is going through training in order to learn how to carry things for me when I don't have the strength.  His tasks will evolve as he is trained and as I research service dogs more.  I have connected with a few people who are my age and training there own service dogs.  They have been an immense wealth of help and ideas.

Went off to doggie boot came as a puppy and came back as a mature little man ready to soak in all the training he is given.  
Zateo is officially registered through the US Service Dog registry which means that he can go wherever I go including an airplane.  A month ago the thought of taking him on a plane was crazy thought because he was so wild and not yet understanding his role.  But in a month he has transformed into an amazing 11 month old lab who responds to what is asked of him.  How we got there is a whole other story which I will share in a later post but today I am blessed with an amazing dog that could fly on a plane with me or go into a restaurant with me.

Yesterday, I took him to PetSmart for a training session.  PetSmart is the epitome of distractions for a rambunctious puppy.  All the smells, people, animals, dog toys and the list continues.  When we walked in he started to get excited and wanting to forget all his training.  But I did exactly what the trainer/breeder said...start with sit and end with sit....it will help him recognize he has a job to do.  So we sat at the door till he relaxed and when we entered we sat again till he showed me he was ready to do his job.  We proceeded to go through the store and work on heel, sit and greeting people.  A month ago Zateo would have been jumping on anyone greeting him, flopping all over the place with any affection, pulling to get to the toys and food, but today was different.  Today, he walked like a man with a job.  He greeted well, just a little hint of excitement.  At one point we stood in the main aisle as I talked to various people, carts were going by, kids were running by, dogs were coming up to him and he simply laid at my feet and watched it all with only a few times of trying to get up to go see something.  He saw when I was getting too tired emotionally and physically and started to indicate it was time to go.  I am really excited to see what this dog will be able to do.

Today, I called Spirit airlines, and he is officially on my reservation in June to fly home to Oregon.  He will fly as a service dog in the cabin with me.  I am both nervous and excited but after seeing how well he did yesterday I know he can do it.  I look forward to sharing this experience and many more as we train together.
Zateo at PetSmart for his first real test as a newly registered service dog!


Faith (8 year old Aussie), Zateo (10 month old lab)
They are best buds and inseparable.  Zateo is even working as a service dog for Faith.  He has mellowed her out and taught her the world is OK...just enjoy it

life as I know it right now...


I work as a nurse in a level 1 trauma center on a critical care floor.  My job is to care for those who have chronic or acute injuries and illness.  I work to educate them, advocate on there behalf and hopefully find a clear path out of the pain, illness, sickness that they have.  I love my job and I love to share my heart and experience with my previous surgery and illness of Chiari Malformation.  But slowly over the past 6 or so months it has become harder to do.  I am not in the hospital bed but I am literally walking in there shoes now in my own private world.

So in the past 6 months I have lost 20 or so pounds, most of it within about a 6 week period.  I was a lean, muscular 119lbs when I moved to Texas.  Now I am a skinny 99lbs.  I have never been this small. With that weight loss went the muscle and strength I once had.  That muscle was what kept me from realizing the reality of what life as an EDS'er (Ehlors Danlos) really means.  The reason for the weight loss had yet to be figured out and numerous tests later still doctors are baffled.  But recently I went to a specialist in Houston who diagnosed me with Dysautonomia which is a condition that often goes along with EDS.  I will explain this condition more in detail later but the reality is that it affects my sleep, daily life, and essentially shuts off my digestive system.  There is no cure for this it is a matter of treating the symptoms which is a challenge and most doctors don't understand it.

My life right now consists of work and then coming home so exhausted that my every day life has taken a hit.  Maintaining a house became tough, getting out and doing things becoming more of a challenge.  I can function at work because others are depending on me and therefore I muster up enough energy and strength to do my job.  If I have to help others outside of work I can muster up the energy, but cleaning my house, preparing to move, or doing basic chores for my own life is hard because I simply have no energy or drive.

I think being alone in Texas without the support I had when I first had brain surgery, has made it very difficult for me to process and deal with all of this.  I think also not feeling well has made it difficult to get myself out there to meet people.  I am an introvert so socialization exhaust me.  My job requires socialization and therefore takes a lot of energy.  So the idea of going out and trying to meet new people is a daunting task.

Just before I got sick last fall, I made the decision to get a lab, who I dreamed of training as a Search and Rescue dog.  One of the biggest reasons I went into nursing was the desire to do disaster work.  Having a dog trained for Search and Rescue is a huge part of my dream.  I came across an amazing breeder, Dark Timber Kennels, in Azle Texas who raises hunting labs.  These dogs have very high drive, super intelligent and can be perfect for what I was looking for.  I contacted him and once I saw he really knew his stuff I told him what I was looking for.  He walked me through the process of picking my pup.  He was looking for a dog with enough drive to be a search and rescue dog, but not so much drive that he would not be a good house pet.  His dogs are on the smaller side which I liked.  I gave him full permission to pick out my pup because I knew he knew what he was looking for...me on the other hand had no idea...I never trained a search and rescue dog.  He had a bunch of litters coming through and he picked based on the parents temperaments, what there pups are usually like and then what he was seeing in the pups as they were growing.  Picking a dog that young is a challenge because there full personality doesn't show for awhile, but he narrowed it down to 2 for me to choose from.  They were 2 yellow male labs.  Both were fearless, friendly, and super responsive but one was already breaking from the group at 6-7 weeks old showing he may be a bit too independent.  So I chose the other one.  I already had a headstrong independent dog at home, I wanted one that would be a bit less challenging to train.

Just about the time I got the pup I began to have stomach issues.  I couldn't keep any food or water in me and it went on for about 6 weeks.  At one point I was at work and was so sick that they told me I had to go to the ER.  I refused...I couldn't leave in the middle of my shift and drop my patients on others.  Besides I was too new and had not yet earned and paid time off.  I promised if I didn't feel better I would go that evening.  I work as a nurse but after my experience with Chiari I don't have a lot of trust in doctors or going to the emergency room.  Being called a hypochondriac or told it was all psychological only to then find out I had a serious condition that required brain surgery really made me frustrated with the medical system as it is.  So this day my colleagues made me sit for an hour why I did charting and they attached an IV to me.  As small as I am I should have been desperate to pee after the first 1/2 litre but one liter in and I was still to dry to go to the bathroom.  A second litre later and I was feeling tons better but not needing to go to the bathroom.  That is how dehydrated I became.  Prior to the IV I was so dry I could not keep my mouth moist.  It was so dry I could barely talk.  I would have to take a drink of water just to be able to talk and within a minute or too it was dry again.

Instead of going to the ER I decided to go see a doctor.  We tried different things, ran different tests but they could not find anything other than I had gotten a bacterial infection in my stomach which was treated with antibiotics.  But even after that cleared I could not gain any weight, and often could not eat.
During this time, I continued with my plan to raise a puppy as a search and rescue dog.  I really thought just a little time and I would be much better.  But as the winter continued I found I was running out of energy, either sleeping not at all or sleeping for 24 hours.  I picked up enough energy when I had to, to work or go see a friend briefly but nothing more.  Then I started having worsening severe chronic pain in my joints and all over.  This is normal with EDS but it was getting worse and less manageable.  It hurt not to move but it hurt to move.  The only thing that worked to relieve it was heavy pain meds but I don't like the way they feel so most of the time I just deal with it.  A few months ago I began to dislocate joints (all part of the EDS).  I dislocated my right shoulder (my dominant hand) at work and subsequently a few more times.

In February I met with a geneticist that I was referred to by my old doctor who treated me for my Chiari Malformation.  I was not very hopeful that this appointment would provide much help.  I already knew I had EDS (Ehlors Danlos), and apart from it being the vascular type there would not be much difference in what I needed to do.  However, as she sat in front of me she started naming off symptoms I was probably having, tests that came back normal, and how doctors probably started to question my sanity.  I looked at her with eyes wide open and said, "How did you know?"  She said you have dysautonomia along with your EDS and most doctors don't understand either condition so they aren't aware of what to look for or how to treat it.  I wanted to cry right there in front of her.  Instead I went to my car and looked up dysautonomia and began to cry when I saw the symptoms and it matched perfectly with what I was dealing with.  I now had a reason for the weight loss, digestion issues, problems with sleep, problems with wanting to sleep for days, problems with irritability and moodiness and the list goes on.

Great now I have a diagnosis just like I did when I was diagnosed with Chiari.  That was not an easy road to recovery and treatment, but I knew then that there was only one possible cure...surgery.  I simply had to find someone who could do the surgery and do it right.  Now as I have researched my current condition it is hard to be quite so hopeful.  There is no cure, it is a matter of managing the symptoms.  That is great, but again I have an oddball/rare condition that most doctors have no clue about.  I have been trying to find someone to treat me and walk through the process of finding what might work for me, but have had little luck.  In the meantime I find my days are progressively getting worse.

In the past few weeks, I had someone suggest that I transition my mindset for Zateo, my yellow lab.  Maybe instead of training him as a search and rescue dog right now, maybe I should train him as a service dog for me.  That made little sense to me.  I am not that sick!?!  What would people think?  What really could he do for me?  All these thoughts and questions along with many others went through my mind.  However, as I was researching my EDS and dysautonomia as well as dealing with having little use of my dominant hand due to the dislocations, I found that many were finding great relief and help from a service dog.  I am moving forward with the process of training my own service dog and even have him registered but I have not fully wrapped my brain around what that means or would look like.  The biggest thing I have looked at is him carrying groceries in for me when I am having a really bad day and that is enough to wipe me out, or my shoulder is not well.  The one thing I do know is that my 2 dogs are lifesavers.  They make me get up out of bed on days when I just can't because I "have" to take them out to the bathroom.  Or after a few days of working they are needing to burn some energy and they motivate me to get out and go for a walk, or throw the ball.  They are intuitive and know when to push me and when not to.

I can say I am not ready to give up, and have never been one to give up.  I have no idea what the future holds or how I will make it through moment by moment.  However, I have done it before when I had surgery and I will do it again by the grace of God who walks beside me every step of the way.  God is my strength and the one who knows my heart, my struggles and my pain.  He comforts me when there is no one else.  And he created a beautiful creature known as a dog who has incredible intuition and unconditional love.

After some encouragement I am back!

I must say I have not posted on here for awhile.  I initially opened up this blog in order to share about my move from Oregon to NJ so that they could track my movement and know I was safe.  Sadly that information all one day disappeared.  But I continued to share about life in NJ and how things were going.  But for the last year or so I was not sure what the purpose of it was for.  It is titled "SaraJane's Adventures" and I have not felt there was much in the way of exciting adventures going on apart from moving to Texas.  It has been a bit of a blah year and pretty tough for me.

Recently a dear friend suggested I start writing again to share some of my more unique adventures so that maybe I can help others with there journey through chronic illness.  It was one thing to share about being sick and needing brain surgery in 2011.  It was something that I could share and there was an end point.  I truly believed that once I had the surgery and was fully finished with rehab that that would be the end of it. However, in the past year I have been progressively getting worse health wise and not knowing why.  I feared sharing the reality of what I am dealing with because I don't truly know the outcome and there is no cure.  Most people if they saw me would not realize that I am "sick."  I don't want people to feel bad for me, or for people to change how they see me.  In some small way the idea of a chronic illness made me fear people's reactions or that they may begin to back off.

After much encouragement and praying, I have decided to share my new journey in as open and raw a way that I can.  My hope is that others will be able to understand me more but also that in some way I may be able to help some others.  So it may not be the same adventurous post you are used to but I pray in some way it blesses you!

Friday, May 24

And the thunder rolls....


Have you heard the saying, "And the thunder rolls?"  The most memorable use of that saying was in Garth Brooks country song, "And the Thunder Rolls."  Well, I never really understood that term.  To me thunder was a loud pop or bang following a flash of lightning.  That was until I moved to Texas.  My first lightning storm down here blew my mind.  The thunder simply rolled.  There weren't pauses or starts and stops, it simply continued to roll through while lightning formed a light show all around.  It is the most amazing thing I have ever seen!

Currently when lightening is passing through it is often accompanied by another part of creation that many would like to not have.  That is the instability of the atmosphere.  When that atmosphere becomes unstable a tornado can literally drop out of the sky at any given second causing both beauty in it's appearance, while leaving such damage in it's wake.  New technology in the past few years has made it a bit easier for them to predict the possibility of tornado's but even at that, they only can say that the atmosphere is primed and ready for action.  The storm in Moore, OK this week gave a whopping 16 minutes warning.  Here in Tornado alley we have what are known as "storm watchers."  When the possibility is there, these storm watchers will go out and keep an eye out for tornado's.  When one touches down they will have that area turn on their sirens alerting the people in that community to get under ground, or in the most fortified area you can without windows.

With an E4 or E5 it is critical to have a basement to go to, but in Texas the ground is like clay, and is near impossible to build basements or underground shelters.  So we must get as low to the ground and pray it doesn't come over us.

2 weeks ago, I saw the change in the sky occurring.  Clouds rolled in, thunder started to roll, the lightening show began, and the air began to change in an unexplainable way.  At the time, I was naive and more curious.  I was out on my balcony taking pictures.  At one point I was on the phone and said to my friend, "there is an alarm going off, guess I am supposed to go get in the bathtub or something."  That night 3 or 4 alarms went off and I stayed right on my couch looking out my sliding glass windows.  Little did I know that all around me 16 or more tornado's touched down including the deadly one in Granbury, Tx not far from me.

Later a friend explained to me that I am supposed to turn on the TV and they will tell me if it is serious or not, but that an alarm means a touch down has occurred near you.  Well, I guess I failed my first test.

Just this week, I was at work.  The environment was primed for the "perfect" storm so we were on alert all day.  In the early afternoon, they called a "Code black" and we had to go move all of our patients from their rooms into the hallways.  It was an eerie feeling sitting in the hallway listening to the sounds. No storm touched down by us that day and many a storm experts said we were incredibly lucky.

Now, however, I am a bit more knowledgeable about these storms and I take them serious.  The one in Oklahoma started from a blip of storm in the sky and turned into a massive E-5 tornado.  I could choose to be scared and worry or I can trust that God has a perfect time for everything.  The Bible speaks in numerous places that a person's days are numbered.  There is a time and an hour destined for us as it says in Job: "A person's days are determined; You have decreed the number of his months and have set limits he cannot exceed."  Worry isn't going to add to my life!  Worry is not going to change my circumstances!  I have been through enough difficult things in my life to realize that God has me in the palm of His hand and never lets me go.  There may be times, I think He has forgotten me, or left, BUT always when I look back and see how He has provided for me, taken care of me and carried me through, I am AMAZED!!!!

This week, the models are showing some powerful storms may hit our area.  Rather than sit back and worry, I choose to look at the amazing creation and all it's glory.  It reminds me of truly how small I am in the grand scheme of things and how little I have control of.  But MY God is present in all of it, and I desire to make an impact in this world that is lasting.  Each day how I interact with others, when I take a moment to touch someones life in a simple way, I have an impact on this world.  It is like a ripple that spreads through the earth.  I pray God opens my eyes more and more to the needs of those around me, and gives me the ability to love those around me in a way that extends His grace and mercy to others.  God chose to use us to demonstrate his daily love and affection for mankind....what a great honor He has bestowed upon us and now it is our responsibility to take that challenge and do it the justice it deserves.




Sunday, May 19

It was bound to happen....

I knew it was coming, I just wasn't sure when!  The "it" was the incredible ache for what I left behind in NJ.  Well today, it finally happened!  I have been here nearly 3 weeks but have been kept busy with finding an apartment, getting stuff I need, working and taking classes for work.  This week however I ended up with a long 3 day weekend which was a little too much down time for me.

This morning I went to a church of a co-workers.  It was fine but it was not my home church, with my friends and pastor.  Today also would have been my Sunday to sing on the worship team!  When I met the pastor he asked my about my home church and I barely got through it without losing it.  Once I got to my car I sat down and started to cry.  At that very moment, my friend and old roommate texted me saying that there was a SaraJane shaped whole on the worship team and that my friend Trisha really missed me too.  Once I read that text I couldn't stop crying.  Even now as I type it, my eyes are watering.

People who know me well, know that I am not a crier nor am I super emotional.  However, as tough as my time in NJ was, I learned who my true friends were who stuck by me through illness, brain surgery, being knocked out of nursing school, 2 job losses, 2 car accidents and the list goes on.  Through all of that I learned a lot about myself and I learned a lot about opening up to others.  More importantly I began to learn the importance of not being so self-reliant, rather to first rely upon God and second to allow His people to come in and support me.  As I was just getting comfortable with that idea and seeing how amazingly my church will step up in times of need, God moves me to Texas.  I know there is a lesson in all of this.  And the adventurous side of me loved the idea of moving to Texas.  However, the side of me that is not great at opening up and allowing others to walk side by side me in my toughest times was not looking forward to this next lesson.  I know that part of this is that God had taken me as far as I was going to go in that environment and now it is time for me to learn to fly with Him.

It is days like today that I wish I could transport myself to NJ, even if just for a little while, to be around the one's I love and who love me just as I am....all my flaws and challenges.  But I know in due time God will provide what I need down here, in a church, in friends and in a support system.  It is just going to be a bit of a struggle in the mean time and a learning to rely on Him and His perfect love and timing.  He has never failed me and I KNOW He will not fail me in the future.

So today may be difficult but it is in these times I can lay my broken heart at the Lord and wait upon Him to pick me up and carry me as He always has and always will!

A dear friend in NJ gave me a devotional and today I read it and it was PERFECT for the moment as only God could have timed it.  Each devotional is for a specific day.

Today's devotional: May 19

"I want you to know how safe and secure you are in My Presence.  That is a fact, totally independent of your feelings.  You are on your way to heaven; nothing can prevent you from reaching that destination.  There you will see Me face to Face, and your joy will be off the charts by any earthly standards.  Even now, you are never separated from Me, though you must see Me through eyes of faith.  I will walk with you till the end of time and onward into eternity.

Although My Presence is a guaranteed promise, that does not necessarily change your feelings.  When you forget I am with you, you may experience loneliness or fear.  It is through awareness of My Presence that Peace displaces negative feelings.  Practice the discipline of walking consciously with Me through each day."

I Cor 13:12-13: For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.  And now these three remain: faith, hope and love. But the greatest of these is love.

Psalm 29:11  The Lord gives strength to his people; the Lord blesses his people with peace.

Thursday, May 16

Stepping out of my shell....

I know my dear friend Robyn would disagree with me but I am rather shy in large groups until I get to know people.  When I was in college, I got to know people so well and it was a small college so I had no problem being out front as a leader and doing many different things.  However, in the real world, that is big and many different people, I tend to be reserved at first.  Often people will misinterpret it as being rude.  I remember when I started at my church in NJ and they had a fellowship time in between the worship time and the message, I would nearly have a panic attack.  I hated every minute of it  (note: even now that I have been there 5 years and know most people, it still freaks me out).  Forget going to the back after church for fellowship time.  I remember bolting out the back of church immediately after in order to get away from the crowds.  My pastor as well as my good friend Sal would each try to catch me before I bolted and convince me to hang out....but I would have none of it.


The east coast is also very big on greeting with a kiss and sometimes a hug.  If I know you and am comfortable with you that is fine....but this is complete strangers greeting you as if they have known you for years.  When I was looking for churches then, I never returned to a particular church because they had a greeting line to get out the door.  People literally lined up and said good by to the pastor and staff before they left.  This is definitely out of my comfort zone.  

The past 5 years in NJ I have really worked on my natural comfort zone and putting myself out there with strangers.  For me, it takes being purposeful and learning to be OK with uncomfortable situations.  Now moving to Texas where I know absolutely no one....I am truly having to be purposeful.  Many said to me that I was daring moving to a place I didn't know anyone.  For me, it was not an issue moving to an unknown land, or being by myself....I am natural at being a hermit.  On the contrary it is more of a challenge to place myself out there in order to get to know people.  

On one hand Texas is a bit easier because people are so friendly, but then on the other hand people are friendly.  Getting to know people on a deeper level seems to be a bit more challenging.  Work now is not to difficult because it is a small facility and the initial intros are over.  However, church on the other hand is going to be tough.  I am currently checking out different ones to find the right fit for me.  My first week the church was a bit far for my preference.  This last week was good but a bit small which only matters because of being new.  I want to be able to meet others my age to hang out with.  A funny thing happened which my peeps in NJ would laugh about.  After the singing a woman came over and hugged me like a long lost friend.  Then she preceded to take me around the church to meet everyone in the church.  It was definitely a purposeful effort to not want to run out the back door.  LOL

Moving to Texas was the easy part.  Now getting to know people will be the challenge.  I have not always been good at it but I am making a purposeful choice to get out to meet people and not just go out but actually talk to people.   I will keep you posted as I am sure you are all so excited about that.  HAHA  Thanks for reading

Wednesday, May 15

Hit the ground running...

When I arrived in Fort Worth 2 weeks ago, I hit the ground running.  I had 3 1/2 days to find an apartment otherwise I would have had to empty my trailer and find a place to stay short term or pay a fortune to stay in a hotel.  Prior to coming I had done a lot of research on where I wanted to live and apartment complexes in that area.  Unlike NJ it is primarily Apartment complexes so it made it easy to do research ahead of time.  Each location has their own website and pictures.

By Saturday I had settled on a place that was a mile and a half from my job and surrounded by all the shopping and food places you could want.  It is a suburban area on the SW edge of Fort Worth.  One thing I learned quickly about the Dallas/Fort Worth area is that everything is spread out and a drive.  People don't even blink about driving an hour to get somewhere.

My apartment is newer and very clean with all the things you could need.  I especially liked the pools for the hot summer days, though I have since learned that it actually can be so warm that the pools are no longer refreshing.  People who live in Fort Worth like to tell me it is humid but to me it is very dry.  It feels a lot like a NJ winter needing constant lotion, chap stick, and always feeling parched.  The other day I soaked my dog down for a bike ride we were going to take and within 5 min or less she was completely dry.  In humid NJ she would have stayed damp because of the moisture in the air.

Just a mile from my apartment is a biking/running/walking trail that goes throughout Fort Worth.  It runs along the Trinity river.  I have been on it twice so far. The day I went for a bike ride and had Faith run aside me, people were so amazed.  They kept looking and talking about it or making comments.  But then again these are the same people that think I am crazy for walking or riding my bike a mile and a half to work.

Once the hot of the weather comes it is regularly in the 100's with lows in the 70's and 80's.  I don't mind hot and dry especially with central Air.  However, I am not sure I can get rid of my winter clothes because Texans love their AC.  They blast it so that it is like a freezer in the building.

I started my new job a week and a half ago.  The people are super friendly and helpful.  So far all we have done is orientation and now classes.  I should be on the floor by next week if I can have all my classes finished.

Many of my close friends said that Texas would be a good fit for me.  Ironically, I had no desire to leave NJ, not so much because of the people but more because of my family and friends that I had grown close with.  However, after 2 weeks here I am seeing that this assessment is very true.


Tuesday, April 30

Texas bound day 1

Today my friend Loredana and I began the 24 hour trip to Fort Worth, Texas.  I rented a U-haul trailer and only brought what would fit in the trailer.  This morning we loaded up my dog and ourselves and began a long day of driving.  Our destination for the day is Nashville, TN.  14 hours of driving went smoothly.  We followed rule 1-100 very closely which each state, DO NOT put yourself in a position to have to reverse the trailer!  With no incidents and a soundly sleeping dog, our day has been adventurous but without any bad situations.


It is a relief to finally be on the road!  I can't wait to find an apartment, start work, and find a church....beginning a fresh start.  I know it will be tough but I am looking forward to the process and the experience.  

Changes....


After a challenging year employment wise preceded by many years of other challenges, God is moving me.  If you would have asked me 5 years ago if I would be in NJ long I would have said, "Heck no!"  Fast forward to 6 months ago and ask me if I would be leaving NJ any time soon and I would have said, "No way!"  

Why the change?  It is all about the connections!  I moved here to be closer to my big brother and his family.  Since then I have not only bonded with them but also with an amazing church family.  This church family and friends have supported me through a difficult time through nursing school, illness, brain surgery, and job loss.  This past 6 months when I didn't get unemployment initially and had to wait through the long appeals process, which is still happening, my church family has helped me emotionally and practically when I didn't know where money for rent would come let alone food.  I never wanted for anything that I needed.  This is exactly the purpose of the church body and they lived it out.  

Back in December a friend visited Texas and told me I should look into hospitals there as the economy was booming.  They also said I would love it.  I quickly responded "no way!"  I am finally grounded with connections and I had no intentions of going anywhere.  God has used the past years of struggle to both grow me and to teach me about relationships.  

Fast forward to March.  I still had no job; no prospects even, as the nursing market is very poor in NJ.  It only got worse when the largest health care system laid off 90 people.  I finally decided to spend a day applying for jobs outside of NJ.  I didn't have a focused plan, I literally went state by state, place by place and decided if it was a place I thought I could live, then applied.  Within 2 hours of applying to a hospital in Fort Worth, TX I had a call from the Chief Nursing officer and had a phone interview.  When I got off, I immediately said, "No way, I am not leaving Jersey!"  That night as I was going to bed, I was spending time reading my bible and praying.  I finally conceded and told the Lord, "if you want me to go you will have to make it abundantly clear!"  The next morning I woke up with a sense that I was moving.  I can't really explain it other than it was both a knowing and a peace that filled me.  I spent the day applying to a few other hospitals to see if I could line up a few interviews at the same time.  Again within an hour or two I had an email requesting to set up a phone interview.  

Within a few weeks, God provided the money for a plane ticket and rental car, and 3 free nights in a hotel.  All this occurred in ways that could only be explained by the mighty God I serve.  I now had 4 interviews, more than I had in NJ in all the time I was looking for jobs...100's of applications I had put out.  When I returned from my trip to Fort Worth, Texas I had 3 job offers to decide from and things moved quickly from there.  

I don't know anyone in the Dallas/Fort Worth area but I have peace that God is going before me and preparing the way.  I also am excited for the change and to see what God has planned for me.  I am incredibly sad to be leaving my family and friends but I am excited at the same time for this upcoming change.  Only God knows, and I have learned over the past 5 years to go for the ride and have my eyes and ears open as to not miss a thing.  

Friday, March 1

Winds of change.....

Well, it has been a while!  So many times I thought, I should post, but then I couldn't think of anything that was exciting enough!  But tonight I was driving home, and I thought about when I started this blog...my move from Oregon to NJ.  I wanted one central place for people to come and see how the change was going.  Then I had new experiences here in NJ, nursing school, and brain surgery.  But after all those, life got a little boring, I guess :-).

As I was driving I was thinking about this past year, and all that has happened both good and bad.  It has been a very bumpy road, which I have not shared much about.  However, through that process, God has been drawing me near to Him, and speaking to my heart, changing me!  This morning I woke up with a sense that life is going to be taking a major turn, down a road, I don't have any clue where it is leading!  I am not sure exactly what it means, or where I will end up!  But I am at a cross roads and it is time for me to take a look at where this path is leading.  Will it lead me away from NJ and the friends and family who I have grown so close to?  Will it lead me back to my career as a nurse that I had gained and lost this year...faster than you can pull the rug out from someone?  These are questions I don't have answers too!  But in my heart of hearts, I KNOW change is coming! 

I am one who easily flows with where ever the current will take me...a foreign country, 3000 miles across America to a strange land, one career to another....but this current is carrying me somewhere unknown.  It is a little scary and not as easy as it has been in the past!

Tonight as I drove home a song came on the radio!  This song spoke to my heart about all of the unknowns ahead of me!  I spoke peace to my soul!

"Already There"
From where I'm standing
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control

When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit

One day I'll stand before You
And look back on the life I've lived
Cause You're already there
You're already there
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

You see, over the past 5 years through everything I have been through, I have learned one very big lesson....even when we don't understand why something is happening...God does!!!!!  He knows and He is walking through it with us.  He is already on the other side to greet us when we get there, standing next to us cheering us on as we run this race called life!  He loves us and even in the hard and difficult things He NEVER LEAVES us!!!!

So as I continue on this journey of life, and as I wait to see where this path is taking me over the next few weeks, I have NOTHING to fear for He is with me!  

Monday, November 5

Assisting with Hurricane Sandy Clean up

Today, was the first day since the storm hit that I could go anywhere because of the gas crisis here in NJ.  After filling up down south a bit, I decided to make a trek into Staten Island, NY where the costal areas were devastated by Hurricane Sandy.  The entire time I was praying that God would direct me since I had never been to Staten Island and I was really not sure where the flood damage had occurred.  All I had to go on was the name of a street mentioned in an article.  

The woman I helped and I sitting on a dock made of cement that was around 4 feet tall that washed up on the beach!
Usually I would join a group like Samaritans Purse Disaster relief organization but I knew they were not in Staten Island at this time.  As I crossed the bridge and entered Staten Island I followed my GPS to the street I had read about.  As I did so, I prayed that God would show me who needed help.  As I turned on the street which is along the shore but back a ways from it, I started to see the houses that had been damaged.  As I slowly drove by, I saw a blond woman coming out of her house carrying items and I felt compelled by that inner voice to stop.  I immediately pulled over and went up to her and asked her if she could you an extra set of hands.  She immediately threw her arms around me and said, "Yes, I am all by myself."  
Her basement apartment was completely flooded, the ceiling had collapsed, the walls broken down.  The water had risen probably half way up the first floor destroying everything.  Furniture was overturned including a huge, heavy fridge.  
We began the process of carrying all the trash out to the street.  She was widowed and had family but they each had there own house flooded.  As we began working she opened up her entire life to me, all her hurts and struggles.  I listened and prayed for her.  One of my prayers was for some way to get some strong hands to help move all the mattresses and furniture out.  As I went to take a load outside I saw a FDNY utility truck pull up.  The men stepped out and said, "do you need any help."  I jokingly said, "if you can help move furniture we could use the help."  To my amazement he waved to the other men in the truck and the next thing I know, we had 5 strong men to pull out all the heavy items.  I walked inside and told her my prayers were answered and all she could do was smile.  
With their help we were able to empty out the first floor!  The pile outside was probably 5 or 6ft high of all of her memories and personal effects.  As the men were leaving they stopped me and said, "Thank you for stopping to help her, we here in NY are a family when tragedy hits, now you are part of that."  I had no words to say except that as a follower of Jesus, I am to be His hands and His feet to the world, a reflexion of his mercy, grace, and love.  It is something I am compelled to do because of the great mercy, forgiveness and love He has given me.  
Today, I had the chance to help one person, but as I drove the street there were SO many who were trying so hard to salvage their lives.  I can't help them all physically but I can pray for my Great God to step in and carry them in their time of great need.  I don't think my time there is over, and I pray that God will direct each encounter as I return.  
“Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’
“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? 39When did we see you sick or in prison and go to visit you?’ “The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’
Matthew 25:34-40


Heading out the back door

The back yard with debris everywhere


The back yard with a couple feet of debris covering it.  

The front yard with debris

Personal items destroyed



The neighbors house completely off the foundation







The basement.  water completely filled this and half of the first floor at least.  Collapsed ceiling, walls destroyed.  

FDNY Brooklyn to the rescue


The national guard in town













a palm tree that washed up out of nowhere!  Someone decided to plant it!


Friday, January 20

Happy New Year...A bit late or is it? My journey with Chiari



Most people celebrate the new year January 1st. The new year is an opportunity to begin anew and to move forward and accomplish dreams or tasks you have set your sights on. Well, I am 20 days late by most standards, but for me my new year begins January 20. January 20, 2011 I had brain surgery. A surgery which changed my life.


A doctor recognized the "Invisible" condition that I had and was willing to help me. By that time, I was becoming debilitated with headaches that were constant and daily. Even the strongest narcotics did not touch them. The chronic pain in my body was constant and felt as though I had run a marathon even though I had not been able to run since November of 2010. I had to be careful how I would walk down stairs because if I led with my right leg there was a good chance I would fall down them. If the ground was uneven or if I had walked too much my right leg would often catch any bit of ground that was in its way. At work I would be carrying things in my right hand and all of a sudden, for seemingly no reason, I would drop it. I will never forget the first time it happened. I had just finished emptying a patients urine bag. I was carrying the container of urine with my right hand when it just released and the entire container of urine spread across the floor.

My memory, which has always been one for remembering things in great detail, began to fail me. I would put something down one second and the next I could not remember where I had put it. I would look at people I knew for years and I absolutely could not remember there names. My roommate and others around me would watch me searching for things frantically because I was so forgetful. My frustration grew and I found myself becoming angry at my forgetfulness.

Even my internal organs were beginning to be affected. It came to the point where the doctors were evaluating whether I should begin straight cathing myself in order to release the urine in my bladder. I had lost the sensation to go and I had a difficult time starting. Some times for weeks on end I could not eat because I was so nauseous and for no apparent reason. I began to have my eye sight affected and for a few years I had been losing my hearing for no apparent reason.

I went from being active and running marathons to barely getting through work each day. I would come home and either go to sleep or rest in the lazy boy chair. I had no energy and I no longer wanted to feel the pain that consumed me. Only those closest to me did I let my guard down. Many people would say that I "appeared" normal. But I mostly found myself staying home and attempting to hide my true symptoms. I was tired of hearing people say, "you seem fine!" That is like saying to someone with cancer, "you don't look sick!" Not always do people wear there symptoms on their sleeves, and not always are the symptoms obvious.

I was born with two rare conditions. Chiari Malformation which is a herniation of the Cerebellar tonsils (part of the brain) into the spinal canal. And Ehlors Danlos Syndrome a rare connective tissue disorder that affects everything from the skin inward to the heart. Both of these conditions are not well known by many doctors and so many times they would say what I was feeling was psychological. Often people with Chiari go misdiagnosed for 10 to 20 years if they are ever truly diagnosed. The herniation causes many problems but 2 of them are the fact that the Cerebral spinal fluid cannot flow freely through the brain and spinal areas and thus causing the headaches from pooling of the fluid in the brain. The other problem is that the herniation puts pressure on the nerves running through the area which affects every part of your body, hence the seemingly random symptoms.

When I went to the neurologist, she said to me, "I believe your symptoms are real, I can see in my neurological tests there is a problem, but your symptoms seem to be scattered and not focused so it is tough for me to pin point what is causing them." We both had Multiple sclerosis at the forefront of our minds, as many of my symptoms mimicked that. However, when they did the MRI I had no plaque on the brain, the tale tale sign of M.S., but I did have a 3-4mm herniation of the brain (It later grew to 5mm and when the surgeon finally did surgery he said it was even more than that). That was when we clued into the Chiari. She and I both felt very confident that was the cause of my symptoms and therefore we moved forward to a surgeon. I knew the ONLY possible cure was surgery and so I told my family that that was what I was going to have to do. Little did I know that I would go to so many of the best Neurosurgeons in the world and have them tell me that I was crazy to think the herniation was the cause of my problem. They all said it was M.S. When I would tell them I didn't have the plaque they said, yeah but you have the symptoms. It took me more than a year to finally find a doctor that understood Chiari. My first appointment was more than 6 hours long and was super detailed. He answered any question I had and was so thorough I walked out of there with my head spinning but finally feeling like someone understood me.

Every Neurosurgeon I spoke with about the Chiari Institute told me they were "hacks", and to be careful because all they want to do is surgery. Yet when I asked them what solutions they had for me they honestly could not give me an answer. I finally had to begin to look at the statistics, which showed they had the lowest complication rate, and the highest success rate in the country. I chose them over another neurosurgeon even though it potentially could cost me 50-100,000 even with insurance (By God's grace it ended up being minimal cost compared to what we expected).

January 20, 2011 I went in for surgery unknowing what the outcome would be. At best I may completely improve or I could even get worse. For me I had come to the point that I was worsening so quickly that I would rather try to fix it and hopefully get better than not do anything at all which was already hopeless. They shaved the back of my head from top to bottom and from side to side. The had two incisions that formed a T. They opened the back of my skull and shaved part of my first vertebrae in order to access the brain and spinal area. They had to open the dura and they used a special procedure that most doctors don't do (but is part of there high success rate) in which they cause the cerebellar tonsils to pull back up into the skull. They then close the dura and the skull with patches leaving the space larger than it was to begin with.





When I woke up, I was my usual combative self. I don't seem to handle anesthesia very well :-). I woke up in my room and had wires connected everywhere to me. No one was with me but I knew my mom, friend Carmen, and my brother were supposed to be there. I yelled out for the nurse and she came in saying she was trying to contact them. For some reason the only number I could remember was Sean's. She called him and he said he was 15 min away. I had a clock directly in front of me and I began counting down the minutes. 15 min came and went and I was yelling for them to come in again. By time they all arrived, I was firing everyone of them. I was so confused and uncomfortable. I remember saying once I calmed down, "my head is so clear, I can see. Look I can read that sign." My brother kept telling me to not get ahead of myself. But even though I had just had major surgery and the pain was intense. I could feel a difference both in my head and in my body. There was a clarity that I can't explain. It was like I had been in a fog all those years and the fog had just lifted.

They say it takes a year to see the full results and also to see if the surgery may potentially relapse. Today is exactly one year. They had no idea how much improvement I would have. They knew the headaches would go away but as far as all the problems from the nerves being pinched, that was uncertain because no one knew if they were permanently damaged. I can tell you today that not only are the headaches gone, but my sight and my hearing have improved, and all but the muscle pain has gone away. I have gained control of my right side which was one of the least likely to return.

So for many, they celebrate the New Year January 1st. For me my new year began January 20, 2011. I was given the chance at life again with less pain and less problems. I believe that God has a purpose in everything. He had a purpose in moving me to NJ, 40 min away from the only Chiari Institute in the world. He had a purpose in having me purchase disability insurance before I was diagnosed (When it seem to make no sense). He had a purpose in me dealing with the pain and difficult symptoms...now I can relate to my patients in a way many people can't. He had a purpose in me having Chiari and finding such significant healing. Now I desire to help others understand the condition, specifically doctors, so that others don't have to suffer. Many believe that many of the patients who are diagnosed with M.S. (with scans that show no plaque on the brain) actually have Chiari. The earlier people are diagnosed, the more likely the surgery will heal them. I have shared a few times on this blog my experience with Chiari and I have been contacted by people who I don't even know who have dealt with similar experience but have not found treatment. Last time I met with Dr. Bolognese he said to me, "I hope you can share your story of healing so that others can benefit from it. I can tell the medical community all day long that things need to change in diagnosing these patients, but the person they will listen to is you."

I don't know what this looks like moving forward, but I know that it is part of my mission in life. God allowed me this struggle and has given me a platform to speak from. I only hope that as each new year, January 20th, comes and goes that I will make a difference in some small way in how chiari is looked at and treated.

My lesson I learned from God this past year is He never gives us more than we can handle, and in His word He promises never to leave or forsake us. The lesson I am beginning to learn this new year is that those who seek Him with all of their heart will find Him. He is not hidden but we won't find Him passively. He wants a real relationship with us, and it is up to us to to take His hand and walk forward.


Sunday, August 28

Storm has passed....

But the winds seem stronger now than yesterday and this morning. My windows are rattling and sound like they are about to explode. Very interesting. They are saying we are still getting Tropical force gusts.


Today I walked with my family through the town of Nutley and saw the very heavy flooding that has gone through the town. It was crazy to see a raging river flowing through where a beautiful park usually winds through the town.

We have survived this one now we are waiting to see if the next one that is forming will head our way as some are trying to say.