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

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!