Been trying to decide if I wanted to write something about August 1, my anniversary date for my TPIAT, a 10-hour surgery for me. Followed by 43 days in the hospital and 60 lbs lighter I finally made it home. Anniversaries are something that are usually celebrated or commemorated some way that of a notable event. This event in my life was certainly notable but I do not wish to celebrate the date now 5 years later. August 15 will be yet another anniversary of my first pancreatic attack, which will be 9 years. Again, notable but no celebration is needed. It is hard to celebrate anniversary dates that have marked some of the worst times in my life and continue to play a major difficult role in my life. The memories of those dates and the days, weeks months and years after them have been the most difficult times I’ve ever dealt with. After my first attack, I expected to get better which I did for a few months. Even after my second attack in February 2013, I expected to get better. As the days went on and my pain, nausea and vomiting continued I kept my head up, educated myself, kept a positive attitude, hoped and prayed that everything would be good in the end. I worked hard to be an advocate for pancreatitis, support and educate people and the medical community.
My pancreas was digesting it’s self with the very acid meant to digest food. All the while minutes seemed like hours, hours seemed like days as I struggled to control the unrelenting symptoms of pancreatitis. I became depressed, anxious, angry and less hopeful about the future. The more I learned it became apparent that my unfortunate luck with pancreatitis was here to stay. The constant pain was the worst thing. The longer it went on, it started causing more and more physical and mental problems. It became harder and harder to stay positive and stay focused. I didn’t ask or do anything to “get this disease”. Why would I be punished this way? What the hell did I do wrong? Nothing, but yet I was judged and called an alcoholic, drug addict/seeker and told pancreatitis wasn’t that bad. The lack of knowledge in the medical field about this disease was and still is disturbing.
As the disease progressed, I strived to understand why, how and what was happening. The reality that I couldn’t do my job anymore or many of the normal things I did daily. Not ready to retire for many reasons, I was forced to. Simple tasks became more and more difficult. No more taking for granted the daily chores getting done. Plans got canceled, dreams were slipping away. Home life started to suffer because of my lack of energy, ambition or physical limitations. I became very isolated and hid from people not wanting to show my pain to others. The master of disguise I would stash away the pain face and paint a smile on my mask.
Countless Doctor appointments, trips to the ER, test after test after test seemed to become my life. Time after time trying to start an IV line having to endure stick after stick. 17 sticks is my personal record trying to gain access for an IV. More research to figure out the best treatment or if there could possibly be a cure for this unrelenting monster. A glimmer of hope was that a surgery, the TPIAT, might get me back to a somewhat “normal” life. I guess I rolled the dice or Rolled the Bones as I like to say and took that chance on the surgery. The uncertainty of making a decision and hoping it was the correct one. Technically the surgery was successful but the last 5 years since then have just added more complications. Trying to eliminate one problem created new problems. The emotional and physical roller coaster of ups and downs. Taking out vital but not essential organs will really mess up your digestive system.
I talked to many people who had been through the surgery. A very individual reaction nobody can prepare you for the physical and mental challenges you will face going through such a devastating disease and surgery. They tell you about their experience and what might happen good or bad. Desperate for relief you keep hope for a successful outcome. I read something today that is fitting. “Don’t judge people for the choices they make when you don’t know the options they had to chose from.” Pancreatitis is unrelenting. Unwavering it feeds on your pain, anxiety and any weakness you have. It is a 24/7/365 constant battle. It forces a lifestyle change that isn’t easy physically or mentally.
Having pancreatitis can cause financial hardship on patients. This disease is expensive. It is a chronic disease needing lots of different medications to trick the body into thinking it is the normal substance. Enzymes, insulin, diabetes supplies, iron infusions, the list can go on. Enzymes alone are almost $1,000 a bottle which will last 8-10 days. Not to mention the multiple doctors you see, blood work, cat scans, MRI’s and so on.
One of the hardest blows was my wife Karen passing, married almost 29 years in the middle of my fight with this disease. The guilt of not being there for her at times when she was sick because I was sick was overwhelming. Losing the support and guidance she provided just enhanced the problems.
Mentally the hardest thing I’ve ever had to deal with. I have been to different counselors and I just shake my head at their approach. I’ve tried to do what they suggest and make things positive. When you have multiple issues going on physically it is difficult to pick one to focus on and work on mentally. The issue can change in minutes and even team up with other problems to overwhelm your will.
Not one counselor understood what having this type of physical pain and associated issues are like. Put your hand on hot surface every 5 minutes until it burns and hurts like hell and keep a positive attitude! Keep doing it for 20 hours a day, everyday. You can’t do it. Do you think it will stress you out? I’m not saying counseling didn’t help but the counseling can dig up old bad memories and that isn’t always good.
It is amazing how many people will tell you “how to get better” even when they know absolutely nothing about your disease. Que the line, “if you haven’t walked in my shoes, don’t judge me.”
The following is a list of things over the past 9 years that have been said to me.
You don’t look sick
Everybody gets tired
You’re just having a bad day
It can’t be that bad
Did you tell your doctor that
Don’t they make a pill you can take
You’re lucky you don’t have to go to work
You need to exercise more
I wish I could take a nap anytime
You just need to think more positively
You need to pray more
You just have to trust God and his plan
Just push through it
You should stop being so negative
Just put happy thoughts in your head
Appreciate what you have
You have lots to be happy about
It could be worse at least it’s not cancer
At least pancreatitis won’t kill you
You need to change your diet
You need to drink more water
You should do yoga
You need more exercise
You need to find a new hobby
I know exactly what you’re going through
I know somebody else with _______ they do just fine
It must be your blood sugar, did you check it
I thought the surgery cured you
What people don’t see are the daily struggles.
“You look good” people say when they see me out and about
I put on a smile and act as normal as I can.
For the short time you see me I can fake a smile and say I am OK even when I’m not.
So what don’t you see, what happens behind closed doors? What happens when nobody is around to see you? Sort of like what happens to the light in the refrigerator when you shut the door? Does it go off?
Pretty much on a daily basis the following things affect me individually or many times at the same time.
Rubbing my legs and arms because they cramp and hurt
Struggling to get out of bed
Doubled over in pain holding in my abdomen because it hurts so bad
Nausea and occasional vomiting
The hours I spend sitting on the toilet
Trying to get my blood sugar up
Trying to get my blood sugar down
Constantly trying to remember what I was doing
Looking in the mirror at the sadness in my face
Taking a fist full of pills hoping they help
Walking around the house in the wee hours of the morning hoping for some relief.
Agonizing over the lack of sleep.
The many days with no energy
Unable to focus on things
Changing plans because I don’t feel good
Not being able to do the work that needs done and accomplish things around the house
Trying to figure out what to eat knowing it will cause much distress
Try to figure out a carb count
The tears running down my face daily
Trying to get my doctors to understand the misery I’m in
Trying to figure out how I’ll pay for my next prescription
The anger and bitterness I now feel
I struggle on most days. Who can I trust to talk to? Who wants to listen to me complain? The only ones who truly get it are my “pancreas friends” because they also live it. I’ve watched over the past 9 years as many of the pancreas community have died from complications from pancreatitis. Older and young, male, female, rich, poor doesn’t matter. Several people I know have died from complications even after the TPIAT. My issues seem like a complex math problem and just keep multiplying. How many more things can go wrong or get worse? I guess the math wizard will figure it out.
Writing has been a way for me to vent the last 9 years. I never wrote anything before that. I could write 10 more pages about my struggles and what has happened the last 9 years but no body wants to read something that long. I’m not sure to many have even read this far or at all. This disease has cost me more than I could ever imagine. I have often wondered if all this struggle to survive is worth it? We all struggle at times! I wouldn’t wish this BS on anyone.
I do have good things in my life and yes I’m lucky in some ways. I don’t need sympathy, just understanding that I’m not who I used to be, not even close. I am unable to do many of the activities that I used to enjoy. I don’t like what this disease has done to me and my life but that is life! I don’t have much hope that I will get any better and improve. Understanding that everyone is just 1 minute, 1 hour, 1 day away from your life changing forever. Good or bad you don’t know when.