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. ]

The Obstruction Rodeo: Two Weeks NPO

The doctor confirmed today that I have a partial obstruction of my small intestine. Luckily I am already on IV infusion treatment, and that will be extended for a few weeks and I will remain under Skilled Nursing Care at home. While I am relieved to not have to be admitted into the hospital, I am not pleased that I will be NPO for at least a couple of weeks until this obstruction resolves. [Nil per os (NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons, such as a gastrointestinal obstruction. It is a Latin phrase whose usual English expansion is nothing by mouth]

Diagram of what adhesions look
like inside the intestine

I have these obstructions regularly, some do not require medical intervention but many do. In total I have had 31 that require medical intervention to resolve. They are the result of multiple abdominal surgeries which involved bowel resections and created scar tissue and adhesions. I will have these obstructions for the rest of my life. Each of these obstructions has the potential to be life ending, if the obstruction ruptures instead of resolving I will become septic and need emergency surgery to avoid death. I have known and lived with this scenario for 15 years.

TPN IV Bags - one is saline with Dextrose with
added multivitamins (yellow) The small white bag is
the Lipids or fats

 Medical technology has greatly advanced in that time. Five years ago if I experienced a major obstruction it meant I would be hospitalized for weeks on end. The non-surgical treatment is to receive all needed hydration and nutrition through an intravenous infusion, control the intense pain, and rest the gastrointestinal tract by being NPO and allow the blockage to release over time. For me surgery is only a last ditch, emergency, save my life once it ruptures option. Now this treatment can be given at home with the new portable IV pumps, and the guidance and care from skilled nursing visits. For me home is much preferable to the hospital, because of the chance for opportune infections and the extreme costs of hospital care. The only drawback to home care is that pain control is far less, but I would rather white knuckle through the pain at home than feel less in a stupor in the hospital.

You can see the size of the I bag in comparison to
the IV pump, the pump fits in your hand.

The one constant that does not ever improve is the psychological effects of being NPO for an extended time. Anyone who has had to stop all food or water before a surgery or a blood test can begin to have an idea of what that is like. Now imagine continuing that discomfort for two weeks or longer. Your mouth dries out so you have to constantly rinse and spit or swab with these yucky sponge sticks. Beyond the physical discomfort is the intense mental anguish. There have been multiple research studies on food deprivation is on par with sleep and air deprivation; meaning it will completely mess up your head in a bad way.

Like I said, this ain't my first obstruction rodeo, but it does hammer home the reality of an inevitable life changing progression of my medical condition. These obstructions will continue and my reliance on infusions for nutrition and hydration will grow until I am on what is called TPN (total parenteral nutrition), where all of my body's nutrition and hydration will be supplied through my veins directly into my blood stream, skipping my GI tract and it means living my life on NPO. The idea of one day never tasting cheese or fresh milk, or chocolate or fresh baked bread suddenly feels all too real. It makes me wonder about quality of life and what is enough.

When so much of our social constructs revolve around food, the eating of it and the sharing of it; the idea of never eating again seems like a big hit to the quality of life category. I know there are people who survive on TPN, most research though does show full dependence on TPN causes serious kidney and liver damage and the life expectancy is roughly 2 years. This is why the team of GI specialists that I work with are doing everything we can to delay the process of having to depend solely on TPN. It is hard for me to wrap my head around living without eating. And don't get me started on the financial burden that medical treatment will become, TPN is far more expensive than almost any external food sourced diet, like 5X more expensive. I have known the TPN thing was an inevitable progression for nearly a decade, it has been looming in the back ground as one of the final boxes on the check list of things that will occur in my final stages of my life. For a decade it has been the boogieman far off in the shadows, too far to really think about because it was too scary and part of the signs that the end is really approaching.

Fortunately for now I am only NPO for the next two weeks, but it certainly gives me food for thought.

The IV bag loaded into the back pack along with the Cadd IV Pump and the high volume tubing set.

The IV Pump back pack rides inside a modified suitcase housing - this
allows the whole thing to roll on four wheels. With a full IV bag, pump and
battery power pack it weighs about 50lbs.

With the suit case housing closed - it rides along like R2D2 - makes it less scary.

The Cycle of Healing; Training the Trainer and Saving a Life

Circa 2011, Jeff Wilson working as a mentor trainer
under the guidance of OperationFreedom Paws
founder, Mary Cortani.

Seems like a lifetime ago, things were just starting with Jeff becoming a mentor trainer at Operation Freedom Paws. I was watching my husband starting to learn he had a real talent for connecting to veterans and helping them train at OFP. I remember being so proud watching him come alive again in helping others. He has such a remarkable heart and the makings of a fine educator.

Jeff never fully believed in his intelligence and talent and it has been my pleasure assist him in finding it in his own way. At first it was a small gift of art supplies and picnics by the lake to inspire him to sketch. Then later it was helping him realize his dream to return to finish his degrees and strongly suggesting to add more art course in his electives. Then suggesting he offer to share his experiences with younger veterans at the Veteran's center's at his colleges.

Then he called me to stop by a pet shop on the other side of town after a long work day to meet a rescue dog. I drove up to see Lobo curled in his lap. I parked, walked in and bought dog food, a crate and toys. When he asked if I would think it was weak for him to train with Lobo to become a service dog I said, "I support you totally." Training with Lobo gave him courage, and as he entered public with Lobo by his side people wanted to know about him. As they asked what happened, Lobo gave him the courage to speak about it. When asked if I would be embarrassed by him sharing his story about suffering from PTSD publicly, I said, "I got your back baby." The surge of passion that poured out of him as he began to work with Mary Cortani, Janet Wenholtz, Megan Landry Wenhotlz and all the staff and clients of OFP transformed him. I proudly watched as Jeff picked up this new mantle of working to help his brothers and sisters in arms.

 We gained a family of dear friends in those early classes. Back then I was still working long hours and our time together could only occur if I accompanied him to training classes on the weekends. I would nap in the car on the hour and a half long rides to and from training. I started spending my Saturday's in training class, sitting and watching at first. As my inability to keep still took over, I began to help out in working with some of the foster dogs. We came early to sweep the pigeon poop off the old warehouse floor, empty trash, scrub out water bowls and line up the chairs in my OCD way. In every class I watched him gain confidence in speaking, confidence in demonstrating complex concepts in the training and confidence in reaching out to those he was teaching. He was watching his students and becoming able to discern how to approach them when they hit the tough moments. Even as he hit one of the toughest moments himself, losing his own service dog Lobo in tragedy, he went back to the work. When the whole world crashed down around him he was called back to the work. Thinking of how his experience could help others. He had made the connection between sharing and teaching, of how opening his heart with all it's pain could speak directly into someone else's pain and how healing that connection could be.

Jeff leading a service dog training exercise with
his service dog Lobo, 2012.

Jeff and Lobo in training class at OFP, 2012.

I remember with deep love the first time one of the clients told me how they felt they could trust Jeff and through that trust he had help them. On the nights I worked too late to accompany him to class, he would bring his students home to me in the form of stories about their break through a in training. In his stories he brought them into his heart and held them there, surrounding them in his care. He cried for their pain and he rejoiced in their accomplishments.

Jeff and Lobo, during a photo shoot with Vicki Topaz,
for her film and photo exhibit of
HEAL! Veteran's Speak About PTSD

When I met new clients in those Saturday classes I heard his stories of their valiant deeds in my head. He was becoming the kind of educator that lives and breathes in his students journeys. He was all in with them on the ride, hands up screaming and laughing as the coaster dropped their stomachs in failures and swept them back up in success. He came home excited to Go back. Watching him soak up the knowledge from his mentor Mary and then apply it, made me so proud.

Jeff working with Selah in training class
for the first time in the weeks following
Lobo's loss. She seemed to know
instinctively how much hurt he felt, she
forced her way into his arms daily, like the
big lumbering, adorable lump of love that
she is.  From the first afternoon, when Mary
brought her into our courtyard, she barreled
up to Jeff and jumped into his arms. Selah was
determined that he would pay attention to her.  

Years later when my own medical condition took my work and dreams from me, I was incredibly proud of how he never let up on me as a student. Even on those really hard days when my tears and pain pulled at his husband's heart he worked from his teacher's determination to help me learn and pushed me to work through my pain. Seeing him successfully strike that delicate balance between loving care taker and teacher was one of my proudest moments. I often speak of how Mary, Janet and all the trainers helped me so much during that journey to become a service team. What I have never spoken of is how much Jeff helped me, even though we were never allowed to work in the same training groups in class proper. He watched me, critiqued me, drilled me and challenged me to keep on when I thought I was not strong enough.

Selah and Jeff demonstrating Puppy Yoga, a
detailed cognitive behavioral meditation
that is taught at OFP.

He is always the last to take credit, the last to tell you about his accomplishments or believe in his talents. I often say I will be eternally grateful for how Operation Freedom Paws changed both our lives for the better. I have not adequately expressed how grateful I am to Mary at OFP for recognizing what I have always seen in Jeff and mentoring him to find his passion for helping veterans and developing his talents as an educator.

Jeff at training class for OFP, 2015. Five years later.

Yes, that first picture at the top seems a lifetime away; a blessed beginning to a life changing relationship and shared passion to change this world for the better. A quality I always recognized and fell in love with all those years ago. A quality I am still so proud to support.

Jeff and Selah in a follow-up photo shoot with Vicki Topaz, for
HEAL! Veteran's Speak About PTSD, 2013.

Selah and Jeff working together, teaching
a training class at the new
Canine Education Center at
Operation Freedom Paws, 2015.

Jeff and Selah in front of the poster of
Heal! Veteran's Speak About PTSD
which features Jeff and Lobo,
the cycle of healing in a photo. 2015.

Jeff and Selah in their favorite position, this is how I see them, locked in love and happy as can be to be with each other.  Selah is a blessing, a big fluffy, tail waggin', slobbery, lumping mess and He would not have it any other way.