Health Update: Into the Woods

Health Update: Into the Woods

The way is clear,

The light is good,

I have no fear,

Nor no one should.

The woods are just trees,

The trees are just wood.

No need to be afraid there-

I have been trying to write a blog entry as a health update for some time now. 

I do this for a couple of reasons:

1. To get the information out into the general knowledge of my friends, family and community accurately so I don’t have to tell and retell the stressful story over and over. I learned years that if you don’t explain what is happening people with fill in the blanks with crazy rumors and I prefer to share the information myself.

 2. The process of writing helps opens the pressure value on the stress around all of the medical stuff and stress greatly negatively affects my ability to heal so the writing is part of a multifaceted treatment including meditation and other continuative behavioral therapy (CBT) exercises.

I can't write fully about this one yet . . . physically it is hard to be awake for more than couple of hours at a time and many times when I am awake the medications have such hard side effects I spend that time very sick or worse.  Also I think it is difficult because I am still in the middle of the journey of it all. Usually I wait to write until I am on the downside with a clearer head and view of everything.  This time I am standing in the middle of the forest and the tress are tall and dark and the paths head out in multiple directions none of which are clearly heading to the light.

So I will revisit all of this and explain some of the deeper thoughts and feelings but for now here is the details to the best of my ability – it has taken six days to get this written so it is what I got for now.

***Warning: the following post contains medical information describing my condition; which is serious and not suitable for all audiences***

Me at O'Connor Hospital, both Girls had to get on he bed
with me - Selah wanted to add to the healing

 On Valentine’s Day, Feb 14^th, 2015, I was hospitalized with a fever of 102.9 and BP rate of 111/60 and pulse rate of 110.  My normal vitals: temp is 96.5, my normal BP rate of 120/80 and my resting pulse is 60.   I was rushed by ambulance to the ER and then admitted to the hospital.

The diagnosis is septicemia or sepsis, stemming form a bacterial infection in my bloodstream that started as a urinary tract infection that spread to a bladder infection and then into a kidney infection which caused an abscess in my kidney which ruptured and sent bacteria into my blood steam.  Sepsis or septicemia is a very serious condition, because the infection is in your blood stream as it circulates through out your body it can easily cause your internal organs to shut down.

I was hospitalized for five days and given huge doses of IV antibiotics.  The blood culture showed I was positive for gram negative pantoea agglomerans bacteria. This bacterium is known to be an opportunistic pathogen in the immunocompromised patients, causing blood, and urinary-tract infections. Once I was stabilized, I was released into home nursing care to continue IV antibiotics.  Gram negative bacteria in the circulatory system causes a toxic reaction, resulting in high fever, low blow pressure, high pulse rate and life threatening endotoxic shock, or in other words seriously bad infection.

Ellie in my hospital bed: doing her job 

Ellie is overjoyed to see Daddy.

After a few days in the hospital I was released into home nursing care.  Where with the help of home nursing care I would continue IV antibiotics for another 14 days.  We have to monitor and track my vital statistics every 3 hours – making sure my temp does not go over 101.9 – which is our “go directly to the ER” number.   The temperature is also a marker of how well the antibiotics are controlling and healing of the infection.  After the first round of antibiotics we had to wait five days and then take a blood culture test.  The blood culture revealed I had a second bacterium that was more resistant now in my blood stream, which was accounting for the continuation of the fevers.  We think the CRE was introduced while I was in the hospital.  Which is not uncommon and the main reason why both my doctor and myself want to keep me out of the hospital and in home care, away from more resistant bacterias.

We started a second round of more targeted and aggressive antibiotics – the kind of antibiotics which come with side effects very similar to chemo therapy.  So I spend a lot of my waking time with my head in a bucket or holding on to my service dog to try and make the room stop spinning.  The side effects are harsh and the infection it self also has some difficult symptoms – if you have ever had a serious kidney infection or kidney stone you have some idea to the pain I have in my back. My right kidney has a 14mm abscess so it is inflamed and very unhappy. I have been through a lot of painful medical situations in the past and this one is up there in the top 5 for miserable and terrifying. 

Evening temp spikes

I am starting my third round of antibiotics and getting care from an infectious disease specialist because we are worried that the infection is hiding in other organs.  I am exhausted all the time; my body aches all over, my back hurts very much from the inflammation of my kidneys and I exist in a state of nausea.  I am also stir crazy from not being out of bed much.  I sleep a lot.  In the next week I have a large amount of tests that will need to be done to try and locate where the pockets of infection are hiding and that means multiple hospital trips and invasive procedures. All of which I am very much looking forward too with as much glee and excitement as one in my state can muster.

My support team at home is great. My husband, Jeff is doing wonderfully in helping my monitor and record my vitals and making sure I get all my meds but he is also still doing all the full-time care giving chores of helping me when I can get food and trying to cater to what things I might actually want to try and eat, which takes a lot of time and work.  

Ellie and Selah on duty : "get back in Bed MOM!"

Ellie on the job - she takes taking care of me seriously.

Ellie my Service dog is working her butt off; she is glued to my side everyday helping me.  There are so many stories to tell about how she has helped me through this (I promise to write about them when I am able).  Selah has also stepped in to be the sentry – she runs to bark and tell Jeff if I call out in pain or the alarm on my IV pump goes off. Selh Jumps of the bed and runs of to bark, "Gwen has fallen down the well come quick come quick!"

But the burden of being a caretaker to a spouse who needs this level of care is emotionally and physically draining.  It is a hard thing to go through and it is harder still to know how hard this all is on him and to understand that my illness is the reason for it.

My IV pump - an older baxter
model "the work horse":
we hang my Banana bag
(vitamins and 5% dextrose)
on one side and the
antibiotic bags on the other side.
I also have PCA that is not pictured.

I use humor to get through most hard times, in the beginning I would joke about my condition having a higher mortality rate that Ebola.  I thought it was funny . . . considering the hospital still had Ebola warning signs up at the front door stating it was certified to handle an outbreak if one should hit in small town CA this is where you come! like some odd advertisement.  I saw those signs and found them hilarious. So the Ebola joke was for me a way of wrapping my head around how serious this is, more viscerally than filling out the advanced directive forms or having a doctor exclaim they are amazed I am stil alive for the upteenth time. My little Ebola joke was a way for me to get a handle on what was going on inside my body and what I was fighting and why I had to be a good compliant patient and rest and do as I was instructed. My little joke was how I was coping with it all. 

One of my doses of "meds"
 I do this every 4 hours.

Until the day I quipped off my little Ebola Joke to a close friend and my husband turned to me with tears in his eyes and said. “please don’t say that any more, I don’t want to hear that anymore.”

“I am joking hun,” 

I replied almost dismissively, “just about the odds you know, like gallows humor”

From a still and stone expression as a single tear escaped his steely gaze he said, “I know the odds, and I don’t think it is funny.”

He is right of course, it is not funny and we both know the odds and we are still in the woods on this one. 

All of the fur babies in bed helping with the healing: Ellie, Selah, and my cat Pax.

I am told it will be some more weeks before things will turn around and I am still strong and hopeful and in my fighting spirit.  We are coping as best we can on this one and we are lucky to have some amazing friends who come by to help with the daily life maintenance stuff which becomes seemingly impossible with all that must be doing with IV tubing and medication bags and injections – thinking about sorting laundry and vacuuming floors feels like a far away luxury of health.  So we are blessed to have the support of some really lovely friends who have come to help us keep coping.  And that is what we will continue to do until we win this battle and trust me we will win this battle and walk together out of the woods, cause that is what we do.  We keep going, hand in hand like always with two funny little pups on either side of us.

All of us

That is all I can muster for now – I’ll fill in the blanks later and continue to update as things change. Until then I’ll let Sondheim take us home.

Into the woods,

Without delay,

But careful not

To lose the way.

Into the woods,

Who knows what may

Be lurking on the journey?

Into the woods

To get the thing

That makes it worth

The journeying.

Into the woods!

Into the woods!

Into the woods,

Then out of the woods,

And home before it's dark!

You have a service dog? What is wrong with you? Or what not to say to service dog teams, ever!

Today I was stopped by a overtly nosey woman as I was trying to finish picking up some prescriptions at the pharmacy.  She grabbed my left arm [ the arm I have the PICC line inserted into it just above my elbow. ]  The physical grab was startling and it hurt to have her wrap her fingers around my PICC site - I am going on 5 weeks now and the skin around my site has become blistered and inflamed. So touching anywhere around the site hurts me.  I don't try to hide my PICC line any more - I learned the hard way from people grabbing my arm that is is safer to have them notice it and stare instead of grasping and squeezing an inflamed site.  I wear a very visible layering of tights and stretch mesh over my PICC line this holds the extra tubing close to my arm and helps keep the tubing from being pulled free and dragging though a place that could cut the line, crimp the line or damage the line or put bacteria into the line.  So my left arm always has a long white or brightly colored sleeve to help people see there is a long PICC line in that arm and to not touch it.  It is very obvious that I have a special sleeve with mesh and tubing on my left arm. So much so that people often stare at it, or ask me if I was in a fire.  But I prefer them being aware of the PICC and not touching me.  Squeezing a PICC line site can cause serious problems, it can move the line in the artery and throw a clot into my heart - which can cause death. So I really do prefer to not have anyone touch that arm especially on the PICC site.  

Ellie and I in our yoga position - you can clearly see the
bandage sleeve and the tubing.  The white sleeve is somewhat
 see thru so you can even see where the PICC line site it by
 the colored plastic and the purple line.

Well the nosey woman today wanted to talk to me about my service dog.  She was one of those people who does not just ask you about your dog but then crosses boundaries and starts to ask me about my medical condition. She wanted to keep talking but I was tired and I politely thanked her for her compliment on our team's good behavior and excused myself to finish my errand so I could return home to rest.  

Well she was not satisfied that I said I was tired and needed to go.  She followed after me and reached out to grab my arm. It was startling and painful and I let out a yelp and winced with her grab. As I yelped Ellie turned to face her and moved into a rear block to get between her and me.  The lady stood dumbfounded and turned her head to look at what her fingers were feeling; the hard plastic disc of the Stat Lock that holds my line securely in place under the large Tagaderm dressing. Obviously she was surprised to feel the hard plastic and then the tube coming out of my arm.   

As if it could not get any worse, she stood there holding my inflamed arm and spouted out, "OMG, what is that thing in your arm?"  

She squeezed again and I again yelped and immediate swiped her hand away from my arm.  At that moment Ellie reacted and began to let out a low growl.  I then backed up three steps pulled Ellie back into Heal position and started too walk away and she followed me again: calling after me, "I thought service dogs are not supposed to growl at people. What was that?!?"  

Then her voice turned shrill as she blurted out in a really snide accusatory tone,  "that is not a real dog is it, be honest you just bought the vest, right, you bought that vest . . I know, I know I have wanted to do it too.  Where did you get the vest, I wanna get a vest too so I can take my little doggie with me everywhere too just like you?!?" 

By this point I know my face was red, my arm was throbbing and I was close to white hot rage. I turned back and said with the iciest voice I could muster, devoid of any emotion and focused like a laser to try and pierce the fog in her brain.  "She is a real dog and indeed a certified service dog with thousands of hours of training, and the growl was a reaction to the assault you perpetrated on my person by grabbing my arm.  You are now interfering with the work of a service animal and that is a felony crime so please step away from us and leave us alone or I will call the police."  

She was outraged that I was standing holding firm, she began to prattle on with, "I never assaulted you, I barely touched your arm thing, what ever that is  . . . . I just wanted to know where you got your vest so I can take my little dog with me too, jeez!"

I can tell you it took every bit of training and life experience to not rip into her and verbally lacerate her into to ribbons.  But instead I took a breath and moved away.  As I passed her, I said in an even more icy voice, "trying to pass off a pet as a service dog is also a crime, a felony. A service dog must be prescribed by a doctor for a medical condition that requires the use of the dog in order to function.  So when you are saying you want to make your pet a service dog so he can go with you everywhere - you are really saying I wish I had your terminal medical condition.  I would gladly give you all the pain and and anguish my medical condition causes me in my life so you can have a better understanding of how inappropriate and utterly rude and hurtful what you just said was." 

Then I tapped my hip and said, "Ellie heal," and we walked as fast as my shaky legs could get me out of that store.  The manager followed me out and caught up with me on the curb and asked if I was ok. I was shaking and apparently extremely upset. The manager was kind and asked if he could assist me.  The manager had seen the tail end of the confrontation and was appalled at the woman's behavior, and I told him unfortunately these kind of confrontations are frequent with service dog teams.  He offered a heart felt apology and walked with me to my van.

Jeff Helping me plug into my IV pump.

When Ellie and I got to the van I opened the side door and commanded her to load and I crawled in after her and curled up on the floor of the van next to her and she started to lick my face. Ellie knew how upset I was and was doing her level best to get me calm again. When I got inside the van with the door closed I noticed my whole body was shaking and I broke down in tears.  I don't know how long we stayed curled up on the van floor but it was a while.  We just sat curled up together breathing and doing our puppy yoga and slowly I calmed down. It took some time before I could pull my self together enough to get up and out and into the passenger seat.  Jeff had stayed in the van, he was also exhausted and was trying to catch a nap after class while I waited for the prescription to fill inside.  When I climbed in the van it woke him and he was disturbed by how upset I was.  His protector gene kicked in and he started to try and get out to go find the woman - but I stopped him and asked him to just stay with me until I could be calm.  My hands were still shaking the entire ride home.  We got inside the house and Jeff fixed me some hot tea and got me and Ellie comfortable on the couch with our blanket, and hooked up to my IV pump in our snuggle position so we could rest.  Bless him and bless Ellie.

Ellie and I settling into rest and be connected
my IV pump, I have to be connected for most
of the day, basically when ever I am home
I have to be hooked up.

This type of confrontation happens all the time to those of us with service dogs, usually not this overt and over the top - but many times people are clueless to the kind of distress the inappropriate questions about our medical conditions or comments about how they want to get a vest so their pup can go with them everywhere too, can be for us.  

You see whenever some one says they think having a service dog is cool and they want a vest so they can have their dog with them everywhere too.  They don't understand what it feels like to those of us who have a medical condition that requires a service dog. - it is tantamount to saying: 

"Wow how cool is it for you to have you have cancer, you get to wear all those fun wigs!"
 or 
"Neat, I wish I had a terminal condition that causes incredible pain and suffering too, so I could ride on that cool scooter"
 or 

"I wish everything in the world brought up mind shattering memories of death and destruction so I can't stand to leave my room, and could just sit at home never leaving"
  
I don't think anyone in their right mind would walk up to a blind person and say, "I wish I could not see so I could use that cool cane," or approach someone in a wheelchair and exclaim, "it would be so awesome to not have legs so I could ride around in a chair like that."

Service dogs are MEDICALLY NECESSARY for their handlers to be able to function out in the world.  They are an extension of the person and function to help that person navigate the world with their disability. Without their dog they cannot do the things in life most people take for granted.    

Ellie watches over me as I sleep.

So it is in no way cool to tell someone with a service dog that you wish you could have your dog with you too and be just like them.  And no matter how curious you are about the disability is that the person with the service dog is living with, it is never ok to ask what is "wrong" with them.  Medical conditions are personal and private.  You would not like someone walking up to you at the store checkout line and talk about all the embarrassing things you don't want the general public to know about your body, so don't ask people to talk about theirs.  You should only ever ask two questions to someone with a service dog: 

1. Is that a service dog?

2. What tasks does the dog do for
you?

If they are comfortable with discussing their medical condition they will tell you when they describe the tasks their service dog is trained to perform for them.  

And Ellie gets to sleep too.

I know that Ellie and I are a magnet for attention where ever we go - she is a cute, attractive, well trained dog and I have the "talk to me" gene.  I also know we are ambassadors for all service dog teams when ever we are out in the world, and especially around home we are walking advertisements for Operation Freedom Paws. But most of all I know that where ever I go when I walk in anywhere the simple fact that I have a service dog tells everyone in the room that I have a serious disability and there is no way to blend in. 

Usually I am prepared and happy to talk about service dogs, the training and the Operation Freedom Paws program but there are some days when it is all I can do to just get in the store grab the prescription and get out. On those days I try my best to be polite when I say I cannot talk today.  

Today was off the charts crazy. . .  

Diving heals the soul and helps me feel whole again, even if just for 40 minutes . . .

We just experienced two of the most spectacular cavern dives of our lives.  We always Dive with Alfredo Duarte from Luum Ha Diving for cavern/cenote dives because they are exceptionally good dive masters and instructors and their professionalism and knowledge about the cave systems in Mexico are top notch.  Here is the link to their Face book site: https://www.facebook.com/LuumHaDiver  

We have been diving with Alfredo from Luum Ha for 5 years and experienced many cenote dives but our trip to The Pit and The Pet Cemetery were by far some of the most challenging and most beautiful we have done. 

This is a map of the whole system here - we only dove the area called the pit - it is the small squarish part in the upper right of the map -so you can see how much we did not see.

The Pit is part of the Dos Ojos cave system. Exploration of Dos Ojos began in 1987 and still continues. The surveyed extent of the cave system is 82 kilometers (51 mi) and there are 28 known sinkhole entrances, which are locally called cenotes.  Dos Ojos is one of the top three longest underwater cave systems in the world. Dos Ojos contains the deepest known cave passage in Quintana Roo with 119.1 meters (391 ft) of depth located at "The Pit" discovered in 1996 by cave explorers who came all the way from the main entrance some 1,500 meters (4,900 ft) away.  In fact the Pit is where Carlos Coste set the free diving record of 150 mt (490ft) on one breath, back in November of 2010. 

We dove in The Pit. There is a long stairway down to a small wooden platform.  This stairway is relatively new – only a few short years ago you would free jump into the water and lover your gear by rope.  Jeff and I have great difficulty with stairs, and Alfredo and the Luum Ha team are excellent with helping us with our disabilities.  They like us believe diving can be done safely for people with some disabilities and without their assistance in loading our gear down to the water we would never be able to see the beautiful places.  We gear up in the water to take the weight off Jeff’s back and my abdomen.  This is a fairly common practice of divers with our disabilities.  The reason we love diving is that once in the water; we can feel like we have the same strength and agility we had before our injuries.  Diving allows us a feeling of physical freedom from pain, and a quieting of the mind we never have outside the water.  We are lucky to have dive master in Mexico, who understands that diving is healing for the soul and body and is willing to have his team assist us in getting into the water so we can experience these amazing places.

Once in the Pit, you descend to about 120ft – the water is fresh and clear as you are descending and around 95ft you start to see the Halocline, which is much wider here than in other caves.  The halocline is where the fresh water mixes with the salt water. Salt water is denser than fresh water so when gravity forces them to mix inside the cave the water stratifies; forming layers which creating very interesting visual effects.  Most cave systems this halocline is just a few feet of layers mixing, but because of the size and depth of The Pit, the halocline goes on for many more feet creating this incredible white cloud.  As you descend into and out of the cloud there are old braches of trees reaching out of the cloud.  And it looked as if we were ascending from Mordor as we came up.  Here is a short video of El Pit: http://www.youtube.com/watch?v=ggIb4R3QtOw We are editing our video and will post it soon, but here isa fun on to give you an idea in the mean time

The formations in the large room near the entrance to the pit 

The limestone formations in the Pit are breath taking. The death of the caves means they are huge.  During the Ice Age the ocean lowered by about 350ft and this whole cave system was above the water line for hundreds of years. During this dry period humans and animals used the caves for shelter and tress and plants took root.  So the caves are filled with fossils of human and animal skeletons.  They have found a female skeleton, in a fetal position as for burial, and dated her to 12,000 years old.  The Pit has a full skeleton of a giant sloth, which is at least 8000 years old and many other bones.  All of the formations of stalagmites and stalactites in the Pit are exceptional, some are hundreds of feet tall reaching all the way down the wall and then there are the shelves with thousands of tiny needle like formations tucked into the side of the cave.  The main shaft of the cave has several tunnels branching off into other chambers. We stayed inside the main area as it took almost an hour to just explore all the incredible formations along the wall as we were ascending back slowly to the surface.  It was a beautiful slow exploration of some of the coolest formations we have seen: there was a section where is looked as if some one had melted butter and maple syrup down the side in big globs for fifty sixty feet. 

After the Pit, the tram graciously carried all of our gear to the surface as we slowly hauled our bodies back up to the van.  We always joke that it takes days for us to recover from the toll it takes on our physical bodies but the joy it gives our souls is beyond measure.  Personally I never feel more ‘alive’ than when I am diving.  Back at the van the team loaded up the gear and we had a nice lunch break before heading to the next dive at the Pet Cemetery.  

The Ladder down into to big open chamber . . . there was no possible way Jeff or I could go there so the younger couple divng with us took my phone and grabbed pictures of the inside for us.  we stood at the top and heard all the "oooohhhhs and aaaaaaahhhhs" and we very jealous.

Meet Heath and Bobbi Allen - they were the second dive team on the trip and they were both great divers and very sweet to help us take pictures in the places where Jeff and I could not walk to on land.  

 This is the large chamber at the bottom of this ladder that looked like it went down forever.

The Pet Cemetery cenote is a shallow dive with max depth of about 25 ft but most of the dive is actually around 10ft.  even though this is a shallow dive in extremely clear fresh water, don’t let that fool you into thinking this is a easy dive.  The whole path is surrounded by very fragile formation, beautiful formations which make you feel like you are gliding through a crystal palace.  This is a difficult dive because the area is tight, the formations are all very close to you and you must have excellent buoyancy control not to tough the formations or the floor.  

The floor is covered in fine silt and one tap of fin or hard kick and you will fill the whole tunnel with a giant silt cloud.  So you streamline and frog kick very lightly and keep yourself from toughing anything.  This is one of the most challenging buoyancy dives we have ever made. Gliding along in and around those formations made me feel like I was flying. 

Here is a short video of the Pet Cemetery Dive: http://www.youtube.com/watch?v=rj9U1U_5JpY

We shot our own video and are working on editing it but I thought you might enjoy these videos in the mean time.

This is the small wooden platform at the entry of the Pet Cemetery, this is shallow and ha heavy silt - so the team packed our gear here for us and we very carefully dressed in the water. Dressing in the water allows me to suit up without causing a huge amount of pain to my abdominal muscles.  I wear a full 5m suit and an abdominal binder to try and lesson that pain during the dive but dressing in the water is a huge help and the only reason I can do dives like this. Diving is an adrenaline sport, but it can be done safely for people with all kinds of disabilities and the more dive masters understand the type of assistance the diver needs the more the can help more people experience the wonder of being under the water.  

The overhead environment is close all around you, you are swimming very close to fragile formations that are thousands and thousands of years old and the floor is a instant cloud of blinding silt.  You touch the floor and you fill the clear water with a silt cloud and if you hit the wall or ceiling you are damaging history. So you get your buoyancy right and start gliding along with great care. This is what I meant by a very challenging dive.

The Pet Cemetery gets it’s name from all of the skeletons found on the floor of the system, where animals wandered in to die thousands of years ago back before the water rose inside the cave.  You can clearly see one full skeleton and several pieces of a huge jawbone plus many other bones. It is a rather exciting history lesson to know the how and why of these amazingly beautiful structures we are now blessed to experience.  There is something quite humbling in those limestone structures, something almost awe inspiring when you realize the millions of years it took to form, the synchronicity of the ice age dropping ocean levels and allowing life to flourish inside the cave and then finally the slow rise of the ocean back to modern levels. All of that had to happen, in that order over that time to allow us to behold the beauty now.  To know that those caves have only been being explored by a very small number of people since the late 1980’s makes me feel very lucky indeed to have experienced them and hold them as part of my soul.

The formations are incredible - he is an example of how the stalagmites and stalactites grow together over time to form columns - now image those columns standing 100's of feet high in the deeper caves.

 All of the bones were in the cave before the water started to rise again so that means they are all at least 8000 years old.  those are some pretty good looking 8000 year old teeth, huh?

Large jaw bone with all the teeth still intact and a partial skeleton of a deer below.

There is now a beautiful new museum on the Dos Ojos site: The Institute of Pre- History of the Americas, that has great exhibits about the ice age and how the fossils came to be all through out the cave system. Here is their Facebook site: https://www.facebook.com/pages/Instituto-de-la-Prehistoria-de-América/155086507853455

If you go to Dos Ojos now – stop at the museum.  The museum building also serves as a meetinghouse for the local Mayan community – a gathering place where they can come together and work with the government researchers.  The cave system is on Mayan land and has been part of their history and culture from the beginning so it is wonderful to see the cooperation between the local people and the researchers.  These caves have only been explored since the late 1980’s and there is so much more yet to find.  The museum will soon house a onsite lab where researchers will be working on fossil finds and the public will be allowed to watch how fossils are brought up from the water and then preserved, tested and replicas are returned to their exact locations. This is a one of kind collaboration with the local Mayan population working to preserve the rich history of this land and the peple and animals who have been inhabiting it for thousands of years.

This is a reproduction of the site where the skeleton of the female's skeleton pictured above - the bones are arranged in a fetal position as if she had been wrapped for burial. the bones were placed before the water rose and that is why they stayed so close together, the skull had an air pocket inside and as the water rose it lifted and turned allow the air to escape and that is why is rolled off to the side slightly when it return to the silt after the water rose above the bones.  To date they have found the oldest fully intact skeleton in the new world - a woman they named Naia and then have found another young man dated about 10,000 years old here in the cave system.  This cave system is one of the third largest in the world and still not fully explored so it is exciting to imagine how many more finds there could be in the waters down there.

They did a reconstruction on the skeleton face and determined this is what she would have looked like. She was around 45 years of age but because of the difficulty of her life she would have appeared much older by our modern standards. these people all used their teeth as their main tools, so their skulls and jaw bones and teeth show a lot of wear and infection.

 Diving for both Jeff and I deeply important to us; not just because we are both disabled with medical conditions which can make life outside the water difficult, but because of how being under the water in the full glory of nature can heal our souls.  I spend a lot of time in and out of hospitals and on Picc lines having having blood transfusions and other medical treatments which make life not so much fun.  so When I am free from those treatment even just for a month or two we try and get underwater again. We run off to feel the ocean around us, see the incredible formations in the cenotes and be with all of the abundant like on the reefs.  Those few precious moments under the water refuel our souls, and even though it may take our bodies a while to recover every second we get under the big blue is worth every moment of recovery outside.  I know my diving days are limited as my condition progresses, but until then, I will fight like hell to keep getting back there.

This is why we are working to help other disabled veterans and civilians learn to dive. SCUBA, and being in the water allows us to feel whole again and move with the agility we had before our injuries or illnesses.  Sharing the gift of diving with other disabled veterans is a life long dream so they too can feel whole again in the big blue.

Today was a tough one, one of the worst in a while.  I know all to well that I could have it worse and that there are plenty of people out there who do.  But today was one that stretched the envelope on my own strength.  I woke up to find my PICC site bleeding heavily again.  It soaked through the dressing and leaked out of the waterproof seal and onto everything.  Seeing more blood scared the shit out of me: knowing the amount of medical crap that would follow.

This is how it started - feeling a trickle of warm blood coming out of the dressing and running down my arm into a pool on the pillow.

 And it did follow; first the on call nurse looked at it, and she refused to do anything but call an ambulance, which I refused to get into because it would route me to the nearest hospital which is not the care needed.

So we headed to a slightly further ER with better care and cued up for the fight to see if I would be admitted to the hospital.  By the time we got to the ER - I had the blood running out of the bandage and into 4 layers of gauze sponge. They have to X-ray the line - make sure it is not bleeding because you pulled it out or something, they confirm the line is working, then they clean up your crazy bloody mess, and give you a new sterile dressing.

Here I am waiting . . . . and waiting . . . .

 And waiting some more . . . Jeff fell asleep in the chair next to me - poor guy has been up all night helping me every time the IV pump alarm goes off from air in the line or an occlusion of the line.

And then they want to keep you for observation, make sure your line is working, that your gut is trying to work.  And they listen to your guts and it makes no sound, or just a high pitched whistling sound all of which cause them to all make that same worried, "I don't know what the fuck to do" face.  Then you discuss the pros and cons to being admitted.

1.  The cost I cannot afford, I would be getting exactly the same treatment, same meds and same IV and same nursing care - with less sleep for 5x the cost.

2. I would be exposed to germs that with my compromised immune system could kill me.

3. Did I mention the cost and the burden that cost places on my family?


Thank goodness I got them to listen to reason and I was released beck to home nursing care.  Back to my little room with my IV pump going beep beep beeeeeeeeeeeeeeep every 15 minutes. I came home and started that iv pump again and drifted off to sleep hoping beyond hope that I would wake in some other life.

Funny thing is that I had not stopped to look at the date until after I posted this.  It was a year and a day ago when I fell unconscious while on a PICC line and had to be resuscitated by my husband, who performed CPR until the ambulance came.  My life changed that day, it dropped to a whole other level of living with illness, and a year later I fear we have leveled up again towards the big boss battle that comes at the end of the game.

Loss of identity . . . trying not to live as a victim

There is a inevitable course of loss when dealing with a terminal medical condition.  As your body goes through the physical stages of degradation your life as you know it follows.  Beyond the first major milestone of the label of being disabled or sick, comes the loss of your job. This is the first major life change that I am writing about, the loss of my job and in many respects my identity.  Your body can no longer support the needs of your will and your employer will move to relieve their company of it's connection to you.  Who wants to have a dying person around, just think of the insurance costs and the social price of watching someone go through pain in the office.  The office is for work not for sympathy.  So you get the call or the letter informing you that your services are no longer needed.  And you scurry to figure out how you will sustain health insurance to cover the need medical treatments that keep you alive and you start the unbelievably long and painful process of proving to a government analyst that you are indeed sick. And you try desperately not to allow the fear and worry about where will the money come from adversely effect your already precarious health.  In my case, stress aggravates my GI tract and starts the chain of events which puts me into the hospital with very dangerous intestinal blockages.  So I have to rise above or get taken under in the rip tide of how my body responds to stress.  But you do what you have to do, right. You fill out the applications, write the 78 page addendum to your medical history, you gather and submit 10 years worth of medical records. You carefully and methodically jump through every hoop and over every hurdle cause you have to, and there is no one there who will do it for you.  And then once you get some semblance of stably in place you take a breath and look around, and finally see the strange place you are now standing in.

For me that place was scarily unnerving. All my life up to this moment had been about the pursuit of dreams, and realizing potential.  Years of schooling, training, the endless slog of a budding artist, the ongoing slog of the established artist and the never-ending search for the next gig.  I had stacked up review, accolades, awards and all manner of resume boosters in the wake of my march towards the prize of becoming an actor and professor.  And when the full gorse of my medical condition reared it's ugly head in the second year of my graduate program, I virally willed myself over the finish line of graduation.  I then ran from the city where the medical trouble began in search of a teaching gig that could provide a stable income and allow me to continue the pursuit of the art.  But life had other ideas as the education job market plummeted in the wake of serious state budget cuts and I found myself in the midst of another medical tempest.  This storm took things to another level, closer to the end of my dream.  No more film or tv acting, for a while, I told myself, for a while.  I was sliding down the slope towards the abyss when out of the blue the miracle was offered. A change for a 'Hail Mary' surgery that could change things, or at least delay them.  So I took it, hook, line and really big sinker.  The surgery was as successful as it could have been and it bought me some years and it bought me more pain and considerable suffering, but none the less more years.  So what to do with this new time?  I stumbled into a job of prestige that was saving the world.

If I could not follow my dream at least I could save the world.  I threw myself into the work. fourteen, sixteen hours a day.  I liked the distraction.  The work distracted me from the pain, and the long hours caused more pain so I needed more distraction so I worked longer hours.  I must have been sight to my employers, this gung-ho naive soul charging off to her own destruction.  You need that, no problem, I'll make it happen was my motto. I did make it happen, every time.  I naively thought that was enough.  It wasn't, not for them and certainly not for me. My body was fighting it's own battle with my will.  All my life previously I had willed my self through every medical catastrophe.  I willed myself to stand and go on.  But now my body could not follow.  I started having moments of body failure.  I used all the medical tools available to prop myself up and keep going.  I worked 14 - 16 hour days with a PICC line in my arm.  I was still very efficient and capable even when running on only 4 of the 6 cylinders.  So I always got the job done. Until the last one, when my body spoke up in a way that my will could no longer ignore.  On a quiet Saturday in May last year, my body slipped into unconsciousness, my lungs stopped breathing and my heart stopped beating and my skin turned blue.  I  would have slipped all the way into death if not for my husband, who threw me to the ground and pounded on my chest to give me CPR until the ambulance came.  I woke up in the ambulance on the way to the hospital and remember flashes of the overhead lights, the blue metal of the door, the metallic taste in my mouth and the flurry of people screaming at me to, "stay with me."  Following that incident my doctor took me aside and had a "come to Jesus moment" about how my job would kill me within a year, and that she would not release me to return period.  I had a couple of previous medical leaves and each time my doctor warned me that my employment was killing me, that the stress of that job was exasserbating my condition dangerously. She had even gone so far to write, "please stop killing her" on one of my medical release forms.  So I took another medical leave thinking all the while that if I just had a week or so to rest I would be better and ready to go back.  But week after week nothing got better and it seemed only to get worse.  And weeks turned in to months and on the final day of my FMLA leave I got the official call stating I was terminated.  It was a very difficult blow.  I had given everything them everything, I had believed them when they said not to worry because they just wanted me to get well and come back.  It was a deep blow.

But I did not have time to wallow in the shock or sadness, I had to get all the ducks in the row to ensure I would have the necessary medical insurance to continue the treatments I needed to keep me alive. So no time to think or feel, just brush off and go head long into the process.  thank goodness for good friends who helped me keep everything together and get the writing done.  I can't really explain how difficult the process of applying for disability really is.  Just when you are in the middle of having to survive a near death experience and coming to terms with the idea that your life as you knew it is over and your future will consist of pain, medical treatments and more pain, you have to stop and write about it.  Not just write about what you are going through, and been through, but you have to prove that it is happening.  I am lucky I guess cause I have ten years of medical records, and I am unlucky because I have a condition that is rare and not familiar to most.

When you tell some one you have cancer, they have a picture in their mind of what that means.  They see the chemo treatment, the hairless, the body slowly wasting and they get that it is serious.  When you say you have mal-absorbtion they have no idea what that means. When you explain that your GI tract cannot absorb vitamins they still don't understand how that can be a big deal.  Even when you explain how low vitamin levels are fatal and cause every system of your body to fail, they still don't have a picture in their mind of what that means.  Vitamins are a chewable gummy bear and not a fatal blow.  Usually I have to get graphic, explaining that my low vitamin K means my blood stops clotting and I can bleed to death, or low iron and B12 cause my bone marrow to be destroyed and I stop making red blood cells, so eventually I die because my organs don't get oxygen.  This means when you are writing an explanation of why you are disabled you have to start at the very basic foundation and work up from there explaining why my bones hurt like late stage bone cancer, or how my anemia from lack of red blood cells means I have to get blood transfusion every 90 days.  What is almost laughable is that not only are my symptoms invisible to most, but the ones that are seen show up as "positive markers" in most people's minds. Losing weight for a woman is always a good thing.  When I drop 9-10lbs in a week it is the first sign of the dehydration that comes with the start of a bowel obstruction.  But most people would post that 9-10lb loss as a victory.  Now try to explain to someone who has never met you, how this medical condition they have never heard of has left you disabled. And in the process of explaining how you are disabled by this medical condition you have to prove that you are unable to work.  Anyone who knows me, and my work ethic can begin to understand how devastating it is to write a treatise on how you are unable to support yourself and need ongoing help.  It is a tough and emotionally draining thing to do.

But you do what you got to do, right.  So here I stand in the middle of a new void.  Where my identity is someone who is sick and dying.  There has to be power in that, if not for me than for others.  To stand firmly rooted in this new identity and embrace it, without fear.  To talk and write about this new identity in ways that might help other know how to act and react in a kinder way.  Somewhere in the back of my mind I hold onto the hope that something will change, some new medical development, some miracle will come along and give me the chance to be a whole person again, a person who contributes to society again.  I also hear the voices of the doctors telling me to allow myself the space and time to heal.  That I have never taken enough time to heal. That the new life I am beginning may turn out to be miraculous.  Maybe it might.  All I do know is that I have more to do here before I cross over and I am still alive after staring death in the face four times for a reason.   I might still have a chance at touching lives from this new identity.  This is where I am now, it is not going to change and it is up to me to make something of it.

So I will do what I gotta do, right.