This post is about my life with chronic pancreatitis (CP). (Click here to read My Pump and Me Part One).
Today I was doing research for my health insurance grievance forms. I had to gather information on some of my medical procedures that my insurance company did not cover. I was astonished to discover that my blog was ranked 3rd in google for “intrathecal pump”. it was incredible. As a result I have decided to put the full story of my pump. An intrathecal pump is essentially a metal hunk that goes inside your body (abdomen wall) and has a device inside it that regulates the amount of medication it releases over time. It is connected to a tube (catheter) that goes up my spinal cord (the empty blank part of your spinal cord) and then empties out as close to my pancreas as humanly possible. My pump has 2 types of medication in it that allow me to have a life outside of my bed.
I initially got acute pancreatitis in Aug. 16, 2002 in a sudden – no warning attack. Over time it has become chronic pancreatitis. The diagnosis is impossible and took ages. In fact, because it does not show up in my blood work or enzymes it was the toughest part of my life to deal with no diagnosis, but extreme pain. I had many near-misses and close calls for my life as a result. It is called idiopathic pancreatitis meaning there is no known reason I have it. It could be the sphincter or “door” of the pancreas that is broken or it could be that the pancreas wall is eating itself… they really don’t know.
The pain is more intense than anything else on earth. It cuts through everything and slices my back in half and my front feels like a huge bayonet has been forced through my middle as if in battle. I’ve heard it is known to be more painful than giving birth. I’ve never given birth but there is no doubt in my mind about this rumor. The pain is caused by many different things including food or lack thereof. The pain is so sharp and horrific. It bounces off my ribs and goes to other places also. If a doctor or anyone puts a finger or hand near my pancreas (in the center just below my where ribs end also known as solar plexus). God forbid someone touched that spot! I would hit the clouds screaming!
Spices do a real number on it as do acidic or fatty foods. I can’t think when an attack hits. All I can do is sit and rock myself back and forth until the medicine hits and think of different ways to die. I’ve tried to be upbeat about it, but it is nearly impossible. When I am at work or near others that are work-related I tend to grin and bear it unless I just can’t take it in which case i go on a walk and then sneak off to hide in my car for a few minutes. Since that is hard to do unnoticed I mostly try to occupy my mind with something until the medicine can work (45-50 minutes). The pump has been incredible as you will read below… I still have to take some medications but nothing even remotely like what i was having to do. I can function now.
Life before my pump: Jax and I were talking about life at that time. Essentially, I was awake about 2 days a week which left me “alive” for only at a base level of barely functioning. I had to make it to weekly therapy sessions so I could approved for the pump. Life basically sucked and I was trying hard to stay alive. It was clear I maybe had 2 years left to live at that rate. I tried multiple alternative healing methods. Everyone would offer some type of advice and I was grasping for anything that might work.
Jax had it really hard. He had to become my caretaker. He didn’t have to – he chose to which was amazing and a real lifesaver. When he reflects on those dark days (years) he remembers a lot of worrying and uncertainty, unpredictability, and the enormous amount of unstoppable pain I was in. I couldn’t eat anything without getting sick. I weent down to 112 pounds and looked horrific. In fact, I’d almost say I look better now at 170 (40 pounds overweight) than I did then. Some stupid people here in LA thought I looked great and wanted to know how I stayed so slim. (so ridiculous!!!) I recall loads of doctor visits, a celiac plexus block that worked but barely broke through the agony, the neurospinal stimulator that electrified my legs. I felt like I was frankenstein hooked up to the mains.
One thing I want to mention is that somehow I managed to continue to run my company through all of this..mind you not very effectively… But I did do it day in and out. I had a great team that was understanding for the most part (if they weren’t I fired them), but it certainly took its toll and took until this month to feel mostly recovered (that’s 9 months). I wish I could’ve taken a full month totally off and that might have been a much better path.
From the 1st onset of pancreatitis it took me 5 years to get the pain under control and that’s only because I’m very lucky to live in LA near UCLA medical center. The darkest time was when we had to consider putting in a stomach pump. How could I run a company and drag around an IV tower? It was not even thinkable. I saw allergists, drank onion juice at the rquest of a mayan shaman, I saw chiropractors, nutritionists, quantum doctors (some biofeedback machine in hippy malibu).
I had to cancel plans and meetings, slept in the closet so an employee didn’t catch me sleeping, visited pharmacies in every port, and as my body grew weaker and weaker, I grew more and more terrified of eating – which made me more weak – the end was in sight.
One of the toughest times was just after the pump trial. For the first time in years I had real relief during the trial. Plus farah fawcett and ryan o’neill were in the hospital next to mine and I’m a huge fan of paper moon! But seriously, I had to wait an interminable 3 weeks to have my pump surgery.
I had my surgery in FEBRUARY and went to work on a BIG project 3 weeks later out of town. There’s not a day that goes by that I don’t thank God for my pump and amazing doctor. I don’t care what it looks like. I don’t care that if I had a baby it would be born temporarily addicted to morphine. I got off almost all the pain killers and take a negligible amount now. I can poop normal! I still can’t ever drink alcohol or eat fatty foods like a corn dog – but I’m alive and have a pretty great quality of life (except for the f..ing RA!)
There isn’t a doubt in my mind that there was NO WAY I could’ve completed that big project (4 months long that I planned for 3 years without my pump). There’s no way I’d be sitting here typing a single word to you guys if it weren’t for my pump. I’d likely be drugged up and in bed, miserable, awake, but miserable. Jax may not have been able to stay positive as long as he did. We would be doomed even though he would’ve kept his chin up. I have done something drastic because if I couldn’t do my job I become deeply unhappy.
Side note: jax doesn’t even notice the pump. Neither do I. It’s hidden under my skin behind the scar (a beautiful scar I might add). If I lost a lot of weight you might see it, but I’d be happy about that.
ME and MY PUMP. Feel free to comment or ask questions.
I love talking about my pump. – yours truly: sasha.
PS: Visit ME AND MY PUMP I for the first part of a series on my pump. For more information about the pump and my own experience you can visit ME and MY PUMP II , PAIN PUMP PLEASE which is a letter from a reader and more info about the steps I took to get my pump. Also: RESOURCE GUIDE 2009-Home Page, and TIPS FOR YOU (which has many links at the top of the page).