Looking Back to Last Year: Hard Won Lessons.

As this year comes to a close, it is natural to look back over all that has happened in the past twelve months.  As I do look back and remember, I have to acknowledge that this past year has been one of the most difficult years of my life. In the past twelve months, many things happened that changed my perspective on my life.  

In February, I was hospitalized with a near fatal kidney infection which became septic and caused damage to my kidneys, liver, bladder, and heart. I spent two weeks in the hospital moving from ICU to the GI ward, and then finally released into home nursing care. It took another four months to recover from the sepsis causing me to have to have a central venous catheter port implanted under my collarbone in June. The central port was implanted because I am now dependant on receiving most of my nutrition, fluids, vitamins, medications, lipids, fats and proteins from an IV connected to an artery just above my heart. This is a huge change in my daily life; a milestone moment in my medical condition. Becoming dependant on partial or total parenteral nutrition is one of those milestones that signals my condition has gotten far worse.  It is comparable to a cancer patient being told they have moved from stage III to stage IV with most research pointing to a 3% survival rate beyond five to six years.  If fact that is how my doctor’s presented it to me so I could understand the enormity of the situation.

Hospital stay in Febuary, with both service
dogs giving healing

The announcement of my change in condition was a game changing proclamation in my medical treatment.  We moved from discussing how all my treatments were geared to help me live a more normal quality of life to now discussing how all of my treatments are geared towards delaying the inevitable.  This is the kind of fundamental shift in perspective that affect every part your life.  I have been keenly aware that my medical condition was not curable and that I was for the most part inoperable, in terms of doing anything to change my situation. Both of my specialists in hematology and gastroenterology are also oncologists and used to handling patients in the later stages and they have been incredibly instructive in how to maintain quality of life while delaying a bowel rupture.  I am not one to place a lot of importance on timelines for survival in medical treatment. I have been told I would die or should be dead in a certain number of months many times previous and I have successfully exceeded my expiration date now three separate times.  So when my medical team discusses timelines I think of them more as guidelines than a hard date. Anyone who has dealt with serious medical condition knows that every person reacts differently to treatment and it is far more important to focus on the daily tasks and how to make each day more livable than to focus on how many months the research says you have left.  Like previous times, I am staying focused on the daily tasks and working on getting through this week and then planning for the next and so on and so on.

At the Infusion Center at Dominican Hospital, April.
With myservice dog, Ellie

Me with Ellie, my service dog during a training
class at Operation Freedom Paws

There is one great thing that a milestone like this does for you; it kicks your need to live in the moment into overdrive. Suddenly the importance of being present becomes very real.  My medical condition has always been a blessing in that sense, by giving me a real honest understanding of mortality at an age early enough to be take advantage of the knowledge and work towards more loving relationships with my friends and family while I still could. It is one of the reasons, why we have never put off traveling. Please don’t misunderstand me – I am not giving up the fight, rather I am focusing on living as much a possible.  The big balance point is how to live as much as possible and not place your body in harms way? For me it turns out to be a precarious balance between treatment and activity.  I am now at a place where I have to plan out every activity on how it fits within my treatment schedule and how my body is doing physically.  That is a fun juggling act when your body does not always cooperate.  For me a weekend trip can cause a week’s worth of needed rest.  So my daily life becomes a bartering game and series of trade offs.

The medical treatment needed to keep me going presently is complex enough to overwhelm most people, but then add on the ridiculous complexities of transitioning from private insurance on to Medicare and you can begin to understand the nonstop battle for medical care that consumed my life from September through the end of the year.  Medicare has a well-known gap in coverage that does not cover home infusion care. As most private insurance companies have come to accept that home infusion is a far more efficient and far less costly way to treat patients who need IV infusions.  Medicare falls behind in not covering this treatment and instead requiring patients to go inpatient to hospitals or nursing homes.  There is current legislation to fix this up for vote in congress, as the national study revealed that this gap in coverage costs Medicare around $80 million annually. As the vast federal program evolved with its complicated coverage components, home infusion fell partly through the cracks. Medicare does cover the actual drugs given in the home. But it pays nothing for the supplies - tubing, bags, needles, pumps - or the administrative, pharmacy, and nursing services that may be involved. This leads to very high out of pocket costs.  I had to buy a very expensive supplemental plan to help me afford to continue the treatment, which I need to survive.  The cost for my treatment now costs me roughly 75% of my total monthly earnings, and will triple my annual costs.  That kind of financial reckoning forced me to reevaluate what was important and rewrite all of my advanced care directives to reflect the new level of financial burden I expect my medical condition will place on my family’s finances over time. 

Me following surgery to implant the central catheter port, in June. Ellie
amazed my surgeon by performing the task to help me lower my BP, he stood
by and watched us work the task and lower my BP 40 points in 5 minutes.
He had never seen a service dog perform a direct medical task, we impressed
him and the staff that day.

Me with my portable IV pump, it is now
my companion monthly, for 10-14 days.

A closer view of the inside of my IV pump - it
all fits inside the R2D2 bag, which rolls.

Between the changes in my medical condition and the transition from private insurance to Medicare most of my concentration has been all used up.  I found myself staying away from social interactions, and I ended up being homebound for the predominance of the year.  It was necessary to do the level of healing and research that had to be accomplished this year, but it took a toll on my friendships.  I had been warned that I would lose most of my friends when I began really sick. In fact nearly every person I spoke to that had experienced the end of life journey from one side or another, the lost of friends was their first lesson to offer me.  I knew it would happen intellectually but experiencing it emotionally is something no one can prepare you for, no matter what they tell you.  Thankfully most of the fall offs have been the expected absences due to life, which are all understandable. But I have had a few unexpected moments that were deeply hurtful, where long time friends somehow decided my need to ask for space in which to heal was some terribly selfish action to become a bad friend.  I fully admit to being less available to be a sounding board or open place to vent friends’ frustrations over their own life issues, in the past year.  I have had to circle my wagons close to focus on caring of my self. I was deeply surprised when one long time friend concluded that I was a tragic drama queen because I could not take the time to listen to their complaints, in a timely manner.  I guess I should have expected it, and I had been warned that something like that would occur but it still hurt when it happened.  It hurt and it taught me a to change my perspective, like everything else did this year.

Jeff with Selah while teaching the training class at
Operation Freedom Paws 

Jeff with Selah, teaching doggie yoga at OFP

This past year has been hard fought and hard won. As I move in to the next year I go with a far different view of what is needed and expected.  I am still trying to live in the present and cultivate loving relationships with people who can have a deeper awareness of what I am facing daily, and offer a support to that process.  I still focus on the daily tasks and being grateful for the myriad of blessings in my life.  I am remarkably blessed to have the unwavering support of my husband through all of  this, together we make a strong team as we journey onward into the days ahead. I am extremely lucky to have his love and support every day.  We are extremely lucky to have the support of our service dogs, and the ongoing training and emotional support from Operation Freedom Paws, which has become such a vital part of our family. 

Some of our extended family at OFP,
at a local event supporting our veterans.

This past year was so very difficult and many mornings were met with a prayer for it all to be done, what kept us both going through it all was the tremendous support from our extended family of the staff and clients of OFP.  They provide a network of people who understand disability and illness and continually remind us of how our lives can still be placed in service to help others, giving our family a purpose beyond the daily medical treatments. I am forever thankful to all my friends, family and extended family, who have been there without question to do the smallest things counting for the largest blessings in our lives.  We could not have made it through this year without those people who have been there to help when I could do nothing more than try to make it through another day. Those people brought us food, watched our home, cared for my husband, keep us sane, washed my hair, send messages and did the smallest of kindnesses; which made the difference in our family giving up hope.  To those of you who have been there, I can never thank you enough for all you gave us, when you had no idea how much it meant.  You are the reasons we are still fighting and still wanting to give what is left of our lives to help others.  

Tomorrow we wake and start the New Year with hopes that next year will be easier and we can benefit from the hard won lessons of the past year.

Jeff with Selah and Myself, with Ellie in my lap. Picture taken by Vicki Topaz, on the set of her sequel to her film project:
Heal! Veteran's Speak about PTSD

Living With Chronic Diseases - Two Remarkable Articles of a Doctor Talking to a Patient and the Patient Talking Back: Great Resources

Sometimes when you are living with a chronic medical condition the world does not make much sense.  You learn the limits of your body in all kinds of strange ways.  Pain that would drop the average person to the floor over time becomes your daily roll out of bed. Spending hours trying to figure out how to dress for a medical appointment so you don’t look too put together and the doctor does not believe you or you don’t look too bad and the doctor thinks you are giving up. The things you start to find normal are far outside what most people see as normal.  Most people go to doctors to fix a problem, they have a medical issue and they and the doctor work to resolve the issue.  But with chronic illnesses sometimes there is no fix.  In chronic illnesses sometimes you go to a doctor to start a relationship because you know one day you will need their expertise even though all their expertise will not fix you. 

Ellie and I in another hospital stay, a recent round of sepsis. Those are words
you don't really think your are gonna say a lot. But I have learned that over
anything is possible. I have had three rounds of Sepsis now. 

This open letter to a doctor - it was in response to an article written by a doctor explaining why chronically ill patients with non-fixable conditions scare doctors. Both the first article and the open letter response are very well written and explain so much of what I have lived and experienced in the past 15 years.  If you are starting down the journey of a chronic illness, living with one or helping a loved one live with one - these two articles are a definite helpful read, they are honest and candid about the interchanges between patients and doctors and how human frailty on both sides of the coin can be a point of the clearest and most beneficial care. Here is the open letter from a patient with chronic illness to doctors: http://themighty.com/2015/11/to-the-doctors-of-chronic-illness-patients/

The original article written from the doctor's perspective is linked in in the  open letter and here is the original url as well: http://www.degosdisease.com/patients/stories/letter-doctor-those-chronic-diseases-read-it-its-so-valuable

Both of these pieces hit me so close to home with what I am going through currently in my battle with my own non- fixable medical condition.
I am about to start a new relationship with a GI specialist which in the best case will be the doctor and surgeon who has hospital privileges at the closest hospital capable of dealing with a life threatening emergency surgery that is the possible outcome of every bowel obstruction I experience. I have bowel obstructions at least a couple of times a week, they are part of my existence and they are becoming more serious and more frequent and that is just how this goes. This is the eventual outcome and one that is the realistic preparation for an episode that will occur in the next couple of years of my life. One of these bowel obstructions will rupture my bowel and parts of my intestinal tract will loose blood supply and die off. When a bowel obstruction goes bad it happens fast and the only solution will be an emergency surgery within hours to prevent death. I have known this fact for a few years, and it is just part of my medical condition. It is not unfair, or sad, or overdramatic or anything other than what will eventually occur. I consider this knowledge a blessing. I know the day will come, I don't where or when but I know it will occur. My attempt to have a good working patient doctor relationship with an excellent GI doctor is part of my preparations to survive that day. I will need a damn good GI surgeon who understands my case history and has dealt with very complicated, multiple previous surgical reconstructions; which have left my abdomen full of scar tissue and very little small intestine.

Ellie and I in the hospital, stays are so much
easier to tolerate because I have her with me.
Before I had a service dog, the predominant
experience of hospital stays is how much time
you spend alone. Hospitals are remarkably
lonely places considering someone opens
your door to come in and poke or prod you
two hours.

I am starting this relationship knowing full well that there is no solution, no cure, no magic, new, or experimental treatment.  There is only the clean up of a ruptured dying bowel and the salvage of any part of my GI tract that could keep me from living completely on IV nutritional replacement.  The surgery will end in some part of the function of my GI tract happening in a plastic bag outside my body.  I know this, once he/she has read the 15 years of medical history he/she will also know this. Then there will be the collective silent head nod as that realization is shared. My hope is he/she might have a perspective which may delay this surgery for a little while longer, and that together we will research on how to delay it for as long as we can.

This is a scary appointment, one I am nervous about.  I am extremely lucky to have a great general doctor who has known me and helped me survive the last 15 years. It took me a long time and many failed attempts with other doctors to finally find and build a good working relationship with her. She has worked with me to help me live through three different expiration dates, that I was not supposed to survive. She has seen the progression of symptoms; she has seen me fight tooth and nail to stay alive.  She also is willing to work with specialists, read and research articles. She always admits to me when she does not know what to do, and we talk through how to approach things.  She is the first doctor who I have ever felt that treats me like a person with equal intelligence and resourcefulness. I am extremely lucky to have her as my doctor. It is why I travel 2.5 hours to see her 2x a month. I don't drive anymore so securing transport to her office is a juggling act of multiple schedules with multiple people. And the distance is why I need to open a relationship with a GI specialist who is closer, because when a bowel obstruction goes wrong it goes very wrong very fast and I have only hours before it goes too wrong to fix and I die. To prepare and to continue to fight to stay alive I have to have a working relationship with a GI specialist and surgeon within range of the closest hospital that can handle a serious bowel rupture in a patient with multiple previous surgical reconstructions. That is the honest reason for the visit and that is a hell of a "hi my name is bomb" to bring into the exam room on your introductory visit.

My hope is that this new doctor will appreciate the candor and the realistic expectations of the situation. That out of this intro we build a relationship that will help me keep fighting for as long as possible.

A hospital stay over valentines day - the balloon sang
"hot stuff" every time it was moved, so of course we tied it
to my IV pole so I would be a parade float walking the halls.
My husband recounts that he got me the singing balloon to
the nurses keep track of me . . .
I used to try and make a break for the vending machines.

I don't really like the idea of my health update posts to be public, not because I don't want people to know about my medical condition, it is already fairly public knowledge. When you walk around with an IV line hanging out of your chest going into a rolling IV pump and your service dog people tend to notice that you have a medical condition. But still I always question if I share too much, because it feels almost too vulnerable to share this level of honesty with my friends. People don't react well to words like death and eventual outcome in the same sentences.  Most people want to see positive affirmations of how you are fighting the good fight mixed with some dark humor about where does that doctor think that tube is going???  But so far the good coming from people reading my experiences is outweighing the fear of the bad and if just one person get something helpful, then it has been worth it.  With how hateful so many comment threads have become in recent months on so many public social media sites, I am not willing to subject my decisions about my health care to a stranger who's goal is to use the comment thread to insult or belittle my situation. The world belittles and degrades sick people enough already. I share my experiences with my medical condition in hopes of helping to educate others on how to advocate for their own health care. I don't have any answers; I only have experiences that might spark an idea or discussion that could help some one else.

photo of one of my IV poles with 8 bags
running, it reminded me of a crazed chandelier
I remember texting that joke to a friend with
this picture and they got offended.   

Today I am sharing my experiences as sparked by some other peoples' experiences with chronic illness.  I highly recommend passing the links on to anyone you may know starting their journey with a chronic condition, living with a chronic condition or their caregivers as both of these articles are excellent resources.

A drawing I did of myself in the hospital
I try really hard to keep my sense of humor, this is a common
theme with other people going through similar medical situations,
because if you don't laugh, you cry.  

A funny side note: In the open letter, the sign that Catherine Richardson is pointing to in the picture here to the left, is hilarious to those of us who have had this exact sign on many of our hospital room walls. Limitations/Special Instructions: No Food :(  - I have had more times than I can count. I actually rewrote the sign in my last hospital room to read much the same way with the following answers: my doctors - lost track, my goal - not die, and the I am going home - as soon as I poop or fart.  it made the nurses giggle and a couple took pictures of it before they erased it. Oh and the French Braid Catherine is wearing is the perfect hospital hair trick - because you know you will not get to wash your hair for 5-6 days. For someone with my amount of red curly hair - if not tied down my hair can get to epic size before they come hose it down with that itchy no rinse shampoo stuff.

One of the great things I got from the open letter Catherine wrote is how similar our experiences have been, that I was not alone. One of the hardest things to come to terms with is the isolation that happens during chronic illness, another eventual fact; you spend a lot of time alone.

A photo of Catherine Richardson - the author of the open letter.  
A friend pointed out that we looked similar - I laughed and replied,
"well you know us sick girls, we all look alike"