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"