Escape Fire: The Fight to Rescue American Healthcare

Last weekend I watched the feature-length documentary, Escape Fire:The Fight to Rescue American Healthcare. It was enlightening.  It talked about what was broken in America's healthcare system. The thesis of the film seemed to be that while systems are in fact to blame for the dire strain our healthcare system is under, it is us, the people of this country who bear the brunt of the responsibility.

How did I come to that conclusion? Because the film spent the majority of it's two hours enumerating the high costs and consequences of obesity related illnesses. All of the experts interviewed said that our systems need to devote more resources to helping people prevent costly illnesses like diabetes, strokes  and heart attacks. They were emphatic that we don't have a "health care" system, rather we have a "disease care" system that is reactive rather than proactive. One example of this was a woman who had uncontrolled diabetes and high blood-pressure. These unchecked conditions led her to undergo TWENTY-SEVEN different cardiac procedures that included stenting and open-heart bypasses. Twenty-seven. Unbelievable. Once she was seen by the Cleveland Clinic her chronic conditions were addressed. She required another bypass even after that.

I don't dispute that obesity is epidemic in this country. Two-thirds of us are over-weight or obese. Fast food is everywhere, even in schools. I also can't deny that the illnesses that result from obesity must be a drain on our healthcare system.

You may have sensed there's a but coming. There is.


BUT, there are a slew of chronic illnesses and conditions that are not triggered by lifestyle choice and which cannot be reversed once they manifest. Gastroparesis is one of them. More resources should be spent increasing awareness among the medical community of the impact of these poorly understood conditions. The chronically ill deserve compassion and appropriate care. Too often  we get brushed off, told it's in our heads when we have a defined illness.

So yes, doctors need to be able to spend more time with patients  Yes Medicare needs reform. Finally, yes society needs to address the forces behind our obesity problem. Don't forget the rest of us, though.

The Chronic Illness Clock: A Treatise on Waiting

In the last two years, my conception of time has changed dramatically.Before GP, my day was governed by mealtimes, commute schedules, TV shows and sports events. Now, my life revolves around med schedules, nursing schedules and when I need to take TPN out of the refrigerator.I don't need a clock to tell me when four hours has passed. My escalating nausea level does that for me. I don't need to know when typical mealtimes are, I no longer feel hunger. On the rare occasion that I do, the urge doesn't last more than about five minutes leaving me little time to actually act on it.

Other than the practical day-to day realities of time when living with chronic illness, time plays a huge role in my life with both illness and disability. At the beginning of my journey with gastroparesis, I kept waiting for this horrendous "stomach thing" to go away. That's why I didn't dash right to the doctor. No one thinks that a symptom like nausea will become chronic and will effectively ruin your life, Once I realized I needed help, time seemed to crawl. I was always waiting. Waiting to see that first clueless GI. Waiting for the things he told me to do to help me. Waiting to see the second GI. Waiting for the testing to be done and then the results to come back.

Even after my diagnosis, I was still perpetually waiting. Waiting to see the Motility Specialist. Waiting for the testing the surgeon needed to be done and results to come back. Waiting for surgery dates. Waiting to recover. Waiting to see if I had any improvement from a surgery. I'm still there when it comes to the stimulator. I ask myself daily WHEN will it start working? When will I be able to ditch TPN? If anyone could tell me that, it would make the huge changes I've been forced to make to accommodate the need for TPN worth it. All of this waiting has got to be worth something, If not, I'll feel like all of this has been a waste of time.

I'm tired of waiting.Get with the program body.

Why?

I am not religious in the slightest. Wasn't raised to believe anything in particular. As I have aged, I've started to believe that *maybe* there's a higher power. I just can't bear to think there isn't some reason for all that has gone wrong in my life. I am at a low point right now. The way things are going is just SO unfair. Why did I have to be diagnosed with gastroparesis? Why was median arcuate ligament syndrome not the reason behind it all? Why didn't I respond to the stimulator like I expected? Why did my only option have to be TPN?

Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving  up would be tantamount to suicide  This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.

People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not  strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.

29 Things About GP

29 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in  November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically  clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments  Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career:  My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know:  That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was:  I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist  Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant  in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant  Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.

The Hardest Year:2012 in Review

As I sit on the threshold of a new year, I am doing what many are doing tonight. I'm looking back on the year nearly over. I am marveling at the struggles 2012 brought for me, medically, professionally, and personally. With all this reflection I'm left wondering how the hell am I still standing? How did I not crumble? The answer is astonishingly simple. I was unwilling to make a choice that was anything but getting on with it.

Lest you have forgotten what I fought through in 2012 here it is again.

I was admitted to the hospital three times this year. I spent a total of 12 days in the hospital. I had two major surgeries this year, separated by just three months. Collectively, these procedures meant I lost a month worth of work time.

I had another gastric emptying study, an MRI, a head CT, a chest X-Ray, a Ph-probe study, a swallow study, an endoscopy, an MRA, and two doppler ultrasounds. I wore a Foley catheter for six days. I had testing of my bladder function. I now take nine different medications a day and two more as needed.Yes, I remembered all of that on my own, though I do have it written down for when I see a new doctor.

Speaking of doctors, my team grew by three this year. I now see: a primary doctor, two gastroenterologists (a general GI and one who specializes in gastroparesis and nutrition support.) a pulmonologist and a uroligist.


Yet despite all of that, I have excelled at my job I'm doing so well that I got a performance award during my year-end review in November. I have the best work family I could ask for. I am valued for what I bring to my job, and am missed when I can't be there.

So, while this year may well have been the hardest of my life, I made it through. 2013 is shaping up to start off just as roughly as I will be starting Total Parentral Nutrition (IV nutrition) in the coming days or weeks. I will make it through that too. As I tell everyone who stands in awe of my strength or courage or bravery, there is simply no other good choice. Just do it!

Scared....

About a year ago, after my first emptying scan but before my diagnosis, I joined a support group for those with gastroparesis. I was initally petrified to think that some of those stories could be in my future. Feeding tubes, TPN, central lines, gastric pacemakers. This is the world I would be living in. It was all kind of fascinating in sort of an anthropological sense. I was intrigued to see how some of the people who seemed so desperately ill could find ways to live full lives. There werre many young women who were in college. Many others who worked at least part-time. I began to see how I could find my new normal amid the insanity that is gastroparesis. My view of the disease was two pronged. People were either pretty sick but lived full lives anyways or they were trapped by the illness in their homes doctor's offices or at worst in hospital rooms. The idea of dying from gastroparesis never crossed my mind. How naive I was.

Six months ago I saw a post on the support group announcing the passing of a young man due to gastroparesis. I was saddned by the news in the way that I think most of us are. Every death is tragic, especially when it happens too young. I will admit that news of that first death didn't resonate much with me. Not in the way that others have since, and there have been many. At least 10 that we know of.  There have been six in the last two weeks alone.

 Each announcement makes me feel a little more vulnerable. I still am relatively healthy in relation to some of my friends. Yes, I have a stimulator now, and it isn't working as well as I had hoped. I am writing this in part to distract myself from the pain from my dinner of a bit of soup and saltines. With each annoucement, I lose a little of that anthropological distance with which I began this journey, and I start to think that it could be me. Not next, not even soon, just someday. Someday tthis insane disease could in fact kill me. That is a bizzare thing to even begin to contemplate.

I try to find some comfort in the fact that no one has ever mentioned more drastic measures like TPN or tubes to me. I know logically that just because I have the stimulatorthat doesn't take the more agressive interventions off my horizon. I can tell my self it won't be me all I want. I never imagined my life would be ruled by such an insidious disease, either.