Warning Vent Ahead:

Today I had to block someone from my Facebook page, it is of no consequence who they were because they did not have my best interest or the interest of those I love in their minds and their intent in their comments was to be hurtful and I don’t have room or energy for people like that in my life.

Ellie and I after I was released from ICU
- with Septic infection in my bloodstream.

There is no doubt I live with a very serious medical condition.  I have more medical records and test results from the past 15 years that most people accumulate over their entire lives.  My condition is real, proven and something I strive to live with in a positive way.  There is no way to fake blood tests, Sepsis is pretty straightforward life threatening infection and hospitals don’t let you hang out in them for fun. When I am in ICU it is for a reason. That IV line that connects to my body every month is real and I don’t pull that IV pump around for giggles and grins, it saves my life. I would not wish the level of pain and anguish I have lived through with my medical treatments and condition on any other person.  My condition is terminal and I will go through an eventual decline that will continue to limit my abilities to do things and that is my reality and it sucks but I know that it will come and that is why every day for me is precious.  Every day I awake to see my handsome talented husband, and our beautiful service dogs is a glorious day. 

Ellie and I getting another week of infusion treatment

 

Ellie and I post op - following the surgery to get my central port.

Some years ago I decided to be open and honest about my medical condition, I blog and write about it in great detail sharing experiences of hospital stays and pictures of intense treatments. I share this to help people understand what we as a family live with and to help others know that even when things seem bleak there is always something positive to hang on to in the darkest hour.  Pain in my life is a constant and it does effect my ability to do some things and it does wear on my emotions but it does not rule me.  Pain ebbs and flows, up and down, back and forth and I float along in it like the waves of the ocean. Some days the waves crash and pound my body against the rocks and other mornings I float along smooth as glass.  But the pain level is not what is important ever. What is important is kissing my husband good morning, holding his hand when mine is trembling, feeling his hand on my back when I cannot sit up, the softness of Ellie’s fur in my fingers and the love in her big brown eyes when she lays her head in my lap.  Those simple acts of love matter more that anything else and that is what is held on to during the pain. Pain is an electric impulse through a nerve bundle and it has no malice for me it just is part of what makes me a stronger person.

My Portable IV pump - it fits inside
my R2D2 rolling bag

My IV line attached to my central port and
connected to my portable pump inside R2D2.

So when some one asks me, “how can my husband and I travel to places and scuba dive if I am disabled?” I get livid.  Disabled people do all manner of things.  Scuba just happens to be what is sacred to us and it is so because when we are under the water we feel strong and whole in our bodies the way we used to before our illness and injuries.  I dive because it makes me feel normal for 1 hour at a time.  It is same reason Wounded Warriors and other Non-Profit organizations help disabled people learn to dive so they can feel that sense of freedom again with their bodies.  I am blessed to know disabled people who win buckles in national Rodeos; I am honored to know disabled people who race cars, run the rapids in kayaks and sky dive.  The difference when a disabled person does some adrenaline type sport it takes more planning and modifications of the equipment.  But life for a disabled person takes more planning and modification. That planning and modification does not make what the person is doing any less spectacular or the person less competent, frankly it usually highlights how remarkable the spirit and strength of heart that person possesses.

Isla Mujeres - Cliff of the Dawn - and one of the most
beautiful and healing places for me.

So when someone implies I should not be celebrating the 5^th anniversary with my loving husband in a tropical island where we can go scuba diving because I am disabled – I tell them to go pound sand and block them from my page.  We save and scrape our pennies all year to make that trip and we are not going to expensive places; we go there because it is mystical and magical and filled with other people we love. Our family dinner downtown on the island, I had my favorite thing Lima soup for 60 pesos or 3.29 USD.  Our hotel room cost less on the island with every meal and drink included than a Best Western room costs here with nothing included not even a bottle of water.  Again, we go to that island because it is not about the money – it is about the wonderful people there whom we have worked with for years and who care for us like family.

We dive because it makes us feel whole - and we are lucky to
have made friends with great dive masters who understand
how to accommodate our conditions so we can dive safely.

My husband knows more than anyone else how many times a doctor has expressed how little time I have left, or how awful the later parts of my decline will be.  My husband more than anyone else understands that I have surpassed my medical expiration date 5 times and I have coded and come back 3 times.  My husband has been the one pounding on my chest breaking my ribs to get my body to breathe again, and he has held my hand when there was non one there but the sound of beeps from the machines.  I will go back to that tiny little island every year to celebrate our love until there is no way to do it.  I will grab my IV pole and roll it onto the plane and through the airport and on that damn ferry until I can no longer.  Because there will come a day went I can no longer make that trip and will only have the pictures and the memories.  I will not apologize for living what is left of my life to the fullest and for spending each day with a smile on my face and making great new memories in my heart. 

We are as goofy underwater as we are on land -
Life is short, so we fill it with laughter.

 My husband is a damn honorable, talented and huge hearted man.  He spends his life giving back to others, helping others to give thanks for how he himself was helped. I have seen him go do this work with his hands trembling from pain and come home in total agony, but again it is not the pain that matters. What matters are the people, who he connects with, who he can help on some level and who through helping them heal his own soul.  I try and help whenever I can and I will until my dying day. Because that is who we are, it is no trick or game; it is who we are and what makes us happy. We are blessed to have found and be a part of similarly thinking people who get it in their bones that in helping others you refuel your spirit and heal your soul.

Another view of the waves at the Cliff of the Dawn -
To the Mayans this was a sacred island where you
came to heal . . . I kinda agree with them.

So I blocked the idiot – removed and deleted any and all nasty posts he said to me, because the time I got left will be spent positively, in service to my community and in making this place better than I found it in any way I can for as long as I can. As I see it there have been multiple changes for me to have been ‘called home’ and each time I awake and come back so someone in high places still has work for me to do and I will keep doing it until I am done.

For those who don’t like it – don’t let the door hit ya on the way out.

 

Jeff and I, exhausted after a dive.  Yes it is hard for us to do it but the memories
are worth it. I can tell you when I have those weeks ing the hospital and things
are real tough, these are the pictures and memories I hang on to, and fight
so we can go back there and make more memories.

The white sands of North Beach on Isla Mujeres - with some of our greatest joys and passions, the work Jeff does with Operation Freedom Paws, paw prints for our service dogs, and the Rolleflex camera and the love we share around all of it.

It Is What It Is; Almost By Definition

So I don't know how to express this - so I am just gonna let it fall out. I have been alone quite a lot since going to the hospital in February. Being alone as a sick person is not unusual it is in fact the norm most of the time. When you are sick you spend a lot of time on your own by yourself. You are alone in the hospital, you are alone at home, and now even when I am out in the world I am still alone; alien to the rest of the world around me. This last crisis of illness has been particulary hard, in terms of the loneliness factor. It was arguably one of the more difficult medical hurdles to overcome in the past few years and the treatment was unpleasant in the best moments and really damn painful most days. 

Just got out of ICU with second case of Sepsis,
I spent little over 4 weeks in the hospital and then
another 20 months in home nursing care.

I have had serious sepsis 3 times now and each time it kills off a part of me, the first time it took my intestines and my marriage, the second bout took a gaping whole in the muscles of my abdominal wall and my dreams, this time we were scared it would take my heart valves not so far it may only be a kidney or so. I don't know all this bout will be lost but I know part of my souls has gone along with it. This bout has been hard And I was and am alone a lot. I have Ellie of course, my service dog and trust me if not for her I would have gone crazy pounded my head against doors (and if I did that a little she is not gonna tell you). Ellie has been the unconditional love wrapped in fur that has given me reason to go through one more day. She is on many occasions the tether to me to stay in this fight. During this infection sepsis craziness I began a slow, stumbling melt down into a really dark hole.

In recovery from Something -
you start to loose count

It happens, my therapist says so. It happens, you get close to death medically and you think about it, you think about it a lot, you calculate the medical bills, if it would better if you were not here making more medical bills and you debate which is better to be here or just to slide under the waves. It happens, it is normal, and it is part of the processing of being really sick; and it sucks. I am a positive person, considering the amount of medical crisis I have been riding shotgun down the avalanche for during the past say 15 years, I tend to classify myself as really freaking strong and positive. 

Ellie and I in the hospital: heaving her with
me is how I get through it all

But as much as I long to be a walking motivational poster, or wise sick person who em parts the wisdom that only comes from standing on the edge of the knife over the abyss; I have my bad days too. I have more cracks in my armor than can ever be repaired and wholes in my soul which are slowly filling with the puddles of sorrow.

Lately I have noticed I don't feel like I fit in anywhere any longer, like I have been sick too long to be normal. Walking around with a rollingIV pump does not do much for the fitting in part and the stares and questions I get if I manage to walk into a Safeway are all pretty invasive and demoralizing. Everyone stares, I am used to that even without my little rolling Iv pump - cause everyone stare with me with Ellie. Only now they don't ask if I am training her - they can tell that she is my service dog, my illness is in no way invisible. So the staring is a little different, it is more filled with pity and even suspicion some times. Mother's pul their children away and to the far side of the soup aisle squeezing their little bodies up against the cans scraping their little faces along the campbell's line up as they try and side step by single file as far from me as possible just in case my terminal might rub off on them. One poor little girl who really wanted to pet Ellie got yanked into last week by her mom who screeched that is a service dog for a really sick person you cannot touch it. I just stood there and let the egg of that comment run slowly down my face and splatter on the floor in front of us. 

One of my first first really big hospital stays for yet another
bowel blockage,it was two day before Valentine's Day
and Jeff brought me this huge flaming heart ballon that
sang Hot Stuff every time you hit or moved it. At first it made me
resemble a parade float but it came in handy when the
morphine made me start hallucinating on day 3 and I kept trying
to escape. It is hard to get away when you walk like a snail
with a giant pole and a flaming ballon that sings hot stuff.
It is no a tradition for me to get singing balloons in the hospital
always tied to my IV poles.

We have had visitors, and that is nice and hard sometimes, because I don't have much energy; so I get tired and don't want to be rude and say I need to go lie down. But more so I just don't feel like I belong in the world of the living much any more. I can handle the isolated run to a doctor's office, that has a real purpose and I still fit in those places. The trip to walk to the yogurt aisle of Safeway, is usually more for Ellie so she can feel like she worked today - or at least that is how I work myself up to do it is for her. Cause if I keep forced on getting her in and through it then I don't have to see the stares and pity and fear. I just feel like the is not a spot for me in the world out there any more, I know that sounds weird . . . but it is what I am wrestling with these days. I have been down and out of it for nearly 5 months now and by all accounts I got at least a few weeks of slow recovery from bed rest to go. by all accounts this last medical crisis has been tough on me and prolly more so on Jeff. 

Ellie and I do CBT breathing exercises and
meditations to help cope with the pain

I used to be a highly social person - I am the type that recharges by being around and interacting with and talking to people. but hers of illness have changed that in me. Because to be sick is to be alone it is just what happens. So my battery does not recharge much any more, that battery of my soul that got it's spark from laughing with others and telling stories and being in the social action. that part of me is turning inside out, I am not experiencing panic attacks when I go out and I am around crowds of people. I want to crawl inside myself and pull my eyelids shut like the rain flies on a tent. 

Ellie is a damn good service dog and one of the reasons I am still here:
Sometimes we we just rest.

I get anxious around people now, nervous when they approach and I back away when they ask about my dog or my pump or what ever. and the whole while I feel like I have unplugged from myself and I am hovering over looking down on the whole scene from across the room watching my disassociated body moves through space and I float behind in this invisible version of myself as a parade float. Maybe it is because I don't seem to have a purpose other than get well, ok I am working on that I am working to get well, then what I will just have another medical thing and I will have to get well again. it all seems so weird, so foreign, so not me.

Me going through a 6 hour Iron infusion. this was my first major
 iron infusion after learning that my lack of absorbing Iron or B or
any vitamin for that mat err was not happening in my GI Tract.
I had been hospital led 2 weeks earlier for a hemoglobin of 5.8.
I also found out that the years of vitamin deficiency had damaged
my bone marrow so I was having great difficulty making blood.
When you receive Iron is is stored in your bone marrow and makes
the marrow swell inside your bones. This is why large dosages of
IV Iron can cause bone pain. At this point the doctors were giving
me mega doses, 650ml.On the first couple rounds of this I was
fine because with the loss of bone marrow my surviving marrow
had room to sweep inside my bones.  After I had a successful
stem cell transplant which helped me restore some of my lost
bone marrow, the next round of mega dose iron made the new larger
quantity of marrow swell inside my bones and it caused intense
agonizing pain as the marrow swelled and pushed on the
bones it causing the bones that hold the major deposits of
marrow to fracture from the inside out

I started all of this my saying I don't know what to say and I still don't, and much less do I understand why I feel so alien from the world. I just do, it is what it is; almost by definition.

Let me make clear that this is not a condemnation of not getting enough visitors or anything like that. Nor is this a pity me plea, or a cry out for people to come rushing to the house to cheer me up, it is not anything like that. And know that if people did run to my house I would most likely hide from you, too scared and weirded out to come out to see you. This is just the stark realization that I don't fit anywhere comfortably right now and that feels real empty and weird and alien and I don't know how else to explain it.

My enthusiasm for being told I would spend the summer in a body brace
cast thing to help my bones heals after mega doses of iron and swelling bone
marrow fractured them from the inside.  

Ellie doing what she does best, making the pain less and the love more.

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.