In twelve days . . .

[ Jeff and I celebrating just before my birthday 2006. ]

In twelve days I will mark a milestone birthday. It is a normal milestone birthday for most people to turn 45 but for me it is monumental because 15 years ago when I was first diagnosed with my medical condition I was informed by multiple doctors that I would not survive this long. I was told by nearly every medical professional that my condition would progress and end in my death within 5-6 years. Every bit of research I read confirmed their diagnosis, that I would not make it to 45. I have, or at least in 12 days I will.

[ My 35th birthday ]

I have survived against the odds, against the intention of medical insurance to deny my access to treatments, against the incredible cost of those treatments. I survived because I am highly educated and when necessary sought more education around my medical condition; reading every study, every article, and always asking questions.

[ Hospital stay 2006, two months after my birthday.]

I survived because I refused to work with doctors who did not have the time or energy to help me fight for the necessary treatments and medications when my insurance denied it. I survived because I fought with every health insurance rep who denied my treatments.

[ Hospital 2007 ]

I survived because I was meticulous in gathering my paperwork and medical records and able to write convincing arguments about why the medical treatment was necessary. I survived because I fought for my right to be treated at home, with home nursing that cost far less than in patient hospital stays where I would be exposed to life threatening infections.  I survived because brought copies of all those medical journals, studies and articles into my doctor's appointments to discuss the findings. I survived because when doctors did not listen to me I searched for and found new doctors. I survived because I carry my medical records with me when I go into the ER to prevent surgeons from cutting me open again to look around.

[ First big rounds of infusions, 2007 - I sit in that chair daily for 6 hours for the two weeks leading up to my birthday ]

[ Spent my birthday in 2008 - in the hospital ]

I survived because I spent thousands of hours on the phone arguing with health insurance reps refusing to let it go. I survived because I spent thousands of hours writing and editing convincing arguments outlining why this treatment was more effective and less expensive. 

I survived because I recorded all my conversations with all those insurance reps and could and would play back those previous conversations when it helped prove my case. I survived because the ACA was passed and prevented health insurance from denying me access to healthcare because of a previous condition and prevented life time caps to my medical treatment.

2009, following week of infusions for Iron - my Birthday.

I survived because I have diligently logged my symptoms, noting time, severity, and any related causes. I survived because I keep a meticulous journal of everything piece of for I put into my mouth and every drop of liquid I drink with the times they were consumed so I can cross reference what food or beverage would cause an obstruction. I survived because I researched pain medications and worked with doctors to develop a multiple ways to manage pain. I survived because I realized that my mental health greatly influenced my physical health and stress in particular exacerbates everything. I have survived because I demanded every nurse follow infection prevention protocol especially when they were too busy to spend the time doing so. I survived because I researched and demanded new trial medications. I survived because I did not let fear or shame prevent me from using medical devises in public. I survived because I did not allow fear or shame prevent me from pursuing every State and national resource to maintain access to medical care. I survived because I put in the thought and effort every single day, in every way possible.

[ 2010, disneyland near my birthday. ]

In twelve days I will celebrate still being alive. In twelve days I will rejoice in all of the wonderful moments in my life I worked to enjoy. In twelve days I will revel in my accomplishments, and remember what my doctor told me last week. She said that I am alive because I am one of the, "most proactive and educated patients she has ever had", and that, "my survival has been a direct result of my conscious decisions, unshakable attitude and enduring sense of humor." She went on to say, "you don't just keep fighting, I have lots of patients who are fighting. You understood from the beginning that never giving up was just the first step. You ask questions, stay informed, read and research and you push me to do the same. You understood that you had to take control of your own medical treatment. More importantly, you do it with grace and with humor. I wish I could teach all my patients to approach their conditions the way you do." I cannot express how validated that made me feel. So many of the interactions I have had with medical professionals have left me questioning everything about myself. Advocating for your own medical care is always difficult but add to it a rare condition and it exponentially ramps up the difficulty. Searching for and finding a doctor who you trust and who you think will fight for you is priceless. When you find a doctor who is all of that, you do what ever you can to keep them because it will mean your life. I have been her patient for over a decade and she has been there for every step in the progression of my medical condition. This is why I drive two hours to see her now.

Infusion time again, 2011 and guess what it is my Birthday

For those who do not know or do not remember, I have Short Gut. I lost most of my small intestines to an infection following an abdominal surgery in 2001. My lack of small intestine prevents my GI tract from absorbing vitamins and minerals. This causes chronic severe dehydration which is life threatening and requires me to be connected to an IV through a port in my chest. The IV infusion treatment delivers all the necessary fluids, vitamins, proteins, and nutrients to my body through my artery. My inability to absorb vitamins and minerals causes a whole host of other conditions that negatively affect every system in my body. I lose bone marrow and then stop producing red blood cells. My body strips the calcium out of my skeleton which leaves my bones weak. The scar tissue in my gut continually causes bowel obstructions. My chronic dehydration places huge amount of strain on my kidneys and liver, which is further exacerbated by my dependence on IV infusion and Total Parental Nutrition (TPN). 

[ Dec. 2013, week of my birthday: My first infusion center trip with Ellie my service dog ]

[ My R2D2 IV pump, this is my first portable IV pump and gives me the ability to move around during treatment days - Summer 2015 ]

Your body is not designed to receive the bulk of it's fluids and nutrition through your arteries. The flow of thousands of milliliters of fluid into your bloodstream negatively effects your internal organs, especially the kidneys and liver. The stress of filtering all those artificial fluids, vitamins and medications takes a real toil on the liver and kidneys. Most TPN patients experience renal failure. The other big side effect from constant IV infusions is the ever present risk of Sepsis. Every time a needle goes into my port there is a risk of getting an infection in my bloodstream. Every time the IV line is opened, every time a medication is added into the IV line and every time the IV bag is changed there is a chance of introducing bacteria into my blood stream. TPN Patients a have high risk of septic infections.

2014, in hospital with both service dogs (mine and my husband's)
they are ganging up on me to make sure I am well cared for.

Patients who have already had sepsis are at a greater risk of contracting it again. I have had sepsis three times. Most patients who are on TPN do not survive longer than ten years, with the most common cause of death coming from sepsis or liver/kidney failure. I have always understood that my time was borrowed and that I would most likely die from side effects to my medical treatment, as in liver failure or sepsis. Last week I was hospitalized for severe pain in my chest and abdomen which turned out to be coming from inflammation of my liver. Chronic dehydration has causes sludge to develop in the bile duct and is obstructing that same duct, which is causing the bile to back up into my liver and making it very unhappy. When your liver is unhappy it is very unpleasant for the rest of your body. And my liver is very, very unhappy, which means I have intense pain.

Nov 2016 - Antibiotic Auto Infusion Ball - this cool little ball is designed to give the timed dose of antibiotics into my IV line without having to use an IV pump - which allows me to take it with me and still get the medication I need.

I am used to living with severe pain, but liver pain is a huge new level of intensity. I have not developed the coping skills to handle this new pain so my doctors placed me on high levels of pain meds. I am back on IV infusions with fluids, antibiotics, and steroids. This signals a turning point in the progression on my condition. When you start experiencing liver and kidney trouble you have moved to a whole other level. Or as I like to refer to it, I have leveled up! I have officially moved into that portion of the progression where the constant stress placed on my internal organs is starting to cause inflammation and eventually failure. This is a significant step towards the door in terms of my medical condition. And this new step forward in particularly devastating for many reasons:

[ Ellie and I resting together, I am getting infusion at Home with  the help of home nursing care, 2012 two weeks before my birthday ]

1. I was doing so well: The IV Infusion treatments were going so well: I started on this IV infusion maintenance treatment in June of 2015 and since then I have had remarkable success. My numbers have not been this good or this stable in a decade. I had more energy and began to feel somewhat normal again.

2. I found new meds: I have been reccomended to start a new treatment that is revolutionary and holds great promise. The injections make the cells in your intestines grow and therefore assisting in absorption in the intestines, with the idea that the new cells could allow me to spend less time on infusions. The treatment is exciting and has the potential to be life changing - granting me years more.

3. Just when I was ready to celebrate: I am approaching the milestone birthday that every doctor swore up and down I would never see. Why do i always hit the turning points right when I think i am finally winning?!?

[ Disneyland 2014, for my birthday. ]

[ Navigating Disneyland for my birthday - going to the happiest place on earth with a PICC line in is tricky, but it is also a much needed distraction. Disney has become the much needed respite for me because they are so good with disabled accessibility. I am able to go there and feel safe, and I can feel human again because of how they assist guests. Trust me when you are dying - Disneyland is a great distraction and safe way to escape. ]

So looking around and taking stock of where I am:

I am coming to terms with having leveled up toward the end of the game while simultaneously passing the birthday I was never supposed to live beyond. I feel conflicted to say the least. Why now when everything was finally working? It feels like two steps forward and three steps back. I can tell you that these kind of hilarious paradoxes become the norm the further down the rabbit hole of terminal illness you go. Which just so happens to be a great source of humor and continual reminder to take nothing for granted. That new medical treatment I am so jazzed about - it uses one life threatening disease to treat another. In my case the medication causes a 'controlled cancer rate' in my intestines; the idea is that the new cells will absorb enough to allow me to have fewer IV infusions. Fewer infusions means less risk of organ failure and sepsis. So the idea is the benefit of the new level of absorption outweighs risk of the controlled cancer becoming uncontrolled. The major draw back (besides possible bowel cancer) is that the new growing cells also cause a huge amount of pain. So much so that most patients are prescribed morphine in similar dosage to actual bowel cancer patients. The growth of the cells will stop when the medication is stopped for most patients, but in 30% there is real risk of the cells continuing to grow and becoming cancerous. Only in terminal world do you think it is exciting and promising to grow new cells through bowel cancer. When you are in the Hail Mary stage of the game - you begin to consider all the option even the ones you never thought you would.

As I look back over all the years I have been dealing with this, I have a lot of pictures of me in the hospital or in treatment somewhere. I noticed that I have spent so many birthdays in the hospital. I thought, "holy shit I have been in the hospital on nearly every birthday." But then I realized it is not being in the hospital that is weird, that is more my norm. It is having birthdays that is the odd thing. For some reason that made me giggle. Oh and that reminds me, I survived because I giggle a lot. I also survived because I made the choice to be with a partner who giggled a lot too. We survive together, giggling along the way.

In twelve days I will celebrate my 45th birthday. I am not sure how or where I will celebrate it, but I am sure at some point there will be dancing. I will roll my little R2D2 IV infusion pump case along with my service dog, Ellie out to the middle of the dance floor to dance. 
I will dance in joy. 
I will dance in defiance.
I will dance in self accepting love.  

I will enjoy the day, mark it with celebration and cherish all those who are there with me. Cause in twelve days I turn 45 years old. Forty Fuckin Five and that is a good good thing. So I am gonna celebrate my birthday.

Then I will get back to fighting to make it to the next one.

[ It has been a long journey through all of this - and I have been through so much. It struck me as I was going through the photos how many birthday I have been in the hospital or in an infusion center or in treatment at home. But then I remember that I am in treatment all the time. The medical treatment is normal daily life and birthdays are the weird things that happen every now and then. ]

Bunny Cakes And Memories That Bubble Up Around Holidays

When I was young; age 2 and before age 6, my mother grandmother had a family tradition that I adored. The tradition involved getting a new Easter dress and making the bunny cakes on the saturday before Easter Sunday.  We were a small family then; just a single mother with two kids in a tiny little house and we were happy.  My grandmother thought I was adorable; would take me to Neman Marcus the Friday before Easter; where we would have high tea with our white gloves and trays of sweet little cakes. Directly following our lady's tea time was the annual trip to the girl's dress department to try on and pick out my Easter outfit.  The dress was always a ruffled frilly lacy amazement which resembled the cakes we had with our tea. The girls dress department was atop this spotlighted stage like area and flanked by matching chrome staircases on each side. It was by far the most elegant shopping area this 6 year old had ever beheld. It was designed to make you feel like a princess from the moment you walked up those gleaming stairs. The sales ladies would scurry to and fro to gather matching lace gloves and frilly lace socks and little patient Mary Jane's all to compliment the incredibly detailed frocks and hats. This ritual female pampering happened only at Easter and I looked forward to it amore so than Christmas morning cause it was only for me.

I am 5 years old an in my last ruffled Easter dress - sans gloves and hat
because I had been running searching for eggs.

We spent the day getting all dolled up and then that evening after dinner we would wash and tie my hair into ribbon curls: so my naturally curly hair would make perfect ringlets and look beautiful for Easter sunday. Once my hair was tied up in the ribbon curls all three generations of women would work together making this Easter bunny cake. The cake would be revealed for the family dinner after Sunday services and be celebrated as the highlight of the meal, so it was a huge delicious deal.  We would bake a yellow butter cake in round pans, let them cool and cut them in half to stand them together upright glued with icing to form the bunny body. Then we would carve the bunny face and paws from the second cake round and ice them into place.  Once the bunny was built we covered the body with tons of buttercream mixed with coconut shreds so it looked like bunny fur. I got to mix the rest of the coconut with green food coloring and spread it around the bunny to make the grass and then I always had the honor of making the bunny face and decorating with jelly beans. I was a perfectionist about decor and cooking even back then and would take hours getting the whiskers and placement of jelly beans just right.  We usually finished just before bedtime and we would sit and and share a 'cuppa' admiring our work.

4 years old in my Easter dress showing off the Bunny cake -
I spent hours arranging the cotton ball bunnies too

I loved those times with my mother and grandmother because they we something only we shared and they made me feel special, adored and loved. My grandmother fancied me looking some what like Shirley Tempe when my hair curled into perfect ringlets and she made sure to parade me around to every sales lady in the store to show off her little princess. I loved every minute of those times. Then I turned 6 years old.  You see this department only held sizes up to 6x in girls dresses.  At age five I had outgrown that magic size limit and the sales lady informed my grandmother that I could no longer fit into those dresses and I would have to go to young miss department and probably the husky side.  The young miss section had no ruffles and lace dresses - it was the boring no where land between cute little girl and full grown young lady. From what I could tell the dresses were shapeless floral sacks with very little embellishments and made from scratchy polyester.  I remember the disappointment on my grandmother's face as we descending the stairs for the final time and walked over into the new section.  The sales ladies were not nearly as nice over there and they directed us to the Husky section.  Yes it was named husky - back then they did not have nice pretty clothes for girls who were starting to become chubby.  I was an early bloomer and my body started plumping out to prepare for the curves that would become my life long figure. I was in a training bra by nine and hit my first moon by eleven and had cleavage in 5th grade.

typical bunny cake like we used to make

That Easter we left with the horrible polyester orange aline dress that had no ruffles or lace and no little lacy socks or new white Mary Jane's. Even the hats did not match the hideous yellow and orange of those huge flowers.  I was devastated but as we got into the car I remember thinking, "at least now we can go home an make the cake" We got back home to find my mother had all the normal cake making ingredients ready to go.  But my grandmother remarked we would not me making a bunny cake and to put all that foolishness away.  She told my mother the embarrassing story of how I no longer fit into the little girl dresses and how I had to go to the husky section.  I saw my mother's face change and her eyes tear and I did not understand why. Slowly she put away all the cake making things and I was sent off to my room to play.  Just before bed I came out to ask for a cuppa  - I figured we would still have our ladies' night cup - instead of hot chocolate I got earl grey and my grandmother swatted my hand lightly as I reached for the sugar bowl and started the conversation that would dominate the rest of our conversations until I left for college.

The conversation when something like this: you are growing  into a young woman now and gone are the days where you can have cake.  You have the weight problem of all our family's women and will never be able to eat cake.  You will need to widdle that figure from now on.  My grandmother laid out the diet plan I was to follow - which included Cambridge Shake meal replacements - the most disgusting diet shakes ever made. After Easter that year I took a tupperware cup filled with this chocolate flavored powder and enough money to buy milk and while the other second graders were eating sandwiches and trading twinkles and fruit cups I would shake my sad little tupperware glass and try and get the ash tasting power to not be clumpy.  From that point on I was always on a diet of one kind or another until I left for college.  First it was the Cambridge diet then it was Slim Fast,  it did not matter it all tasted gross to me.  That easter was when the generations of women in my family taught me to hate my body and gave me the mantra that haunted the whole of my life.  When I stubbornly refused to drink that first cambridge shake, and my grandmother reached over to pinch my nose and lift the glass so I had no choice, she declared that if I did not lose weight no one would ever love me.

My memory of this dress is that my mother and grandmother remarked how I
should never wear white because it made me look fat, I remember my
 date asking why I held my hands  around my wait like I was covering myself
 -well I was cause I was told how fat I looked as this picture was taken
and spent the evening trying to hide it with my hands.  I grew up with
such a distorted understanding of what I actually looked like,

Easter always swirls up conflicts of family memories, mainly because of the conflicts of my family. My childhood was dysfunctional and my relationship with my mother and grandmother resembles a Tennessee William's play on a good day and a Flannery O'Connor story on a bad day.  But under all that conflict there was love, confused, misguided, and at times hurtful love but love none the less. No family is perfect and I regret nothing of what happened to me as a child because it was not my choice nor was there anything I could have done to stop it. I know their misguided ideas about weight loss and the value of being thin was product of their generation and was done in "love".  That Easter broke my spirit and forever changed my relationship to food and weight and self worth. The self loathing which developed out of this experience paved the way for future physical abuse. My lack of self worth made me an easier target for the predator and influenced the hows and whys of what happened later.  Those haunting thoughts of none will ever love me unless I lose weight is why I developed eating disorders into adulthood and why I allowed a surgeon to cut me open and forever damage my GI tract which resulted in a lifetime of medical complications.

My H.S. yearbook photo, I remember crying over how
I looked and my grandmother remarking how chubby
my face looked and giving me lessons in the mirror
on how to suck in my cheeks.

Those scars of my childhood are what carved and shaped my soul.  For the worse and for the better.  I eventually healed myself and began to use those scars as a way of recognizing others, like me who needed help seeing their worth. It is why I wanted to teach and why I became a great teacher.  Those scars made me want to live in a way that helped others.

Easter is a celebration of renewal of the death of one life and the rebirth into another.  Below is the 4 year old me, the me before the world and the female role models in my life taught me to hate my body.  I do not regret the woman I have become now - I am the sum of all my experiences and i add up to a pretty remarkable woman now.  But every time I see one of those little half round easter bunny cakes I think back to this memory and wonder how different my life might have been had the ladies of my family focused their admiration on my intelligence and academic accomplishments, if they had simply let my body go through the natural course of gaining weight to prepare for puberty and not interfered with my developing metabolism by forcing me onto liquid diets in second grade.

So Easter is a conflict of emotion for me, and if you get anything from what I just shared is how important the words said to the young lives around you really are, and to remind you that voicing value in other things than weight and appearance for young girls is critical to how they grow up and to who and what they become.

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. . .