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.