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.