The Study

I remember all too well, the debate I had with myself on trying to decide whether or not I wanted to have the total pancreatectomy and islet cell autotransplantation (TPIAT) surgery. I spent many nights researching, compiling information, talking to others and even had a list of pros and cons. Pancreatitis is some of the worst pain you can have. Being in constant pain made me desperate for any relief. Nothing I had tried to mitigate the pain was working except high doses of strong pain medicine and that was only temporary. The doctors were reluctant to prescribe that and I didn’t want to take it. Treating pancreatitis is like throwing darts blindly. You never know what is going to help or how you will respond as the disease progresses. There is no one size fits all for pain relief. Patients try many different things, including diet change, yoga, mindfulness, medication’s non-opioid, and opioids. A patient can spend years trying to find anything that will help if at all. And let’s don’t forget the fight with insurance companies to get tests or treatments covered. Support or lack of from family and friends and the medical community is also a factor that can have a huge impact on the long-term outcome. I have had many tell me they have considered suicide at one point. It certainly crossed my mind.

If you have kept up with me or read my blog, you know I have said having this disease is the most demanding thing I have ever dealt with. Physically, psychologically, and financially, it is a never ending. Trade one serious problem for other chronic problems. My problems include diabetes, GI issues, malabsorption, PTSD and abdominal pain, although the pain is lower than before surgery.  My bowel perforation last April was from scar tissue of my previous pancreas surgery.   

A study was recently published by the University of Cincinnati, Long-Term Survival Outcomes after Operative Management of Chronic Pancreatitis: Two Decades of Experience. The study covers 20 years of 493 patients who have had operative intervention for chronic pancreatitis (CP). This is the first time a study has been done on long term outcome.

This is a direct quote from the study – Chronic pancreatitis (CP) is a debilitating disease process, causing refractory, chronic abdominal pain, narcotic dependence, frequent hospitalizations, pancreatic endocrine and exocrine dysfunction, and decreased quality of life. The last four words from that statement is really what it is all about. Decreased quality of life!

This link will take you to the article about the study. A link on that page will take you to the published study

Study of pancreatitis surgeries finds steady decline in survival (statnews.com)

These paragraphs from the study say a lot-

Findings from this study identify just how critical psychosocial care is for patients in the post operative period and beyond. Persistent narcotic dependence was the only factor associated with worse overall survival in the final multivariate model. While 73% of patients achieved narcotic dependence after definitive surgical therapy, the remainder continued to require narcotics. Weaning narcotics for these patients after surgery is a clinical challenge and often takes several months to achieve. These findings confirm just how important this process is in the recovery of these patients. Narcotics and psychosocial issues, including substance abuse, alcohol abuse, tobacco abuse, end-stage liver disease and suicide, are a major source of mortality and also identify an unmet need for these patients. A study from Estonia found similar issues regarding poor outcomes in this patient population and behavioral risk factors which they included continued tobacco and alcohol abuse, and alcohol-related liver disease.(25) It remains unclear how much of these deaths are preventable, but it is an area in need of targeted intervention.

This study serves as a benchmark for outcomes in patients with refractory CP requiring surgical intervention. It also identifies a major area of need in this patient population. The care for these patients must continue well after the date of surgery. These patients require coordinate care which should focus on and potentially alleviate some of the major sources of mortality including cardiovascular health, endocrine and diabetes management, as well as oncologic surveillance. Additionally psychosocial support is critical for these patients.

Conclusions: This study represents the largest study to date looking at long-term survival after definitive surgical intervention for chronic pancreatitis. 1-, 5-, and 10-year overall patient survival is 96%, 81%, 63%. Median age at time of death is 50.6 years. The most common causes of death include infections, cardiovascular disease, and diabetes-related complications. Psychosocial issues including narcotic dependence, substance abuse and suicide are a major source of mortality in this patient population.

The results of the studies do not surprise me. I have known from personal experience and meeting approximately 250 pancreatic disease patients face to face plus talking to many more online that there are many complications from this disease and treatments. I know of at least 20 people I’ve personally met who have passed away. I know of many more who have passed from the support groups online.  

The fact that 4 out of 10 will die with in 10 years is sobering. Surgery is supposed to improve your life. Not having surgery on your pancreas and what your life expectancy is would be debatable. It would be good to see a study of patients who do not have surgery intervention, and this is mentioned in the study. Every person having surgery is looking for relief and a better quality of life. It would be interesting to know if patients who continue to have problems and are subject to more things like X-ray/cat scans, anesthesia, or multiple surgeries, if that contributes to pain, cancer or heart problems? What about replacement of insulin, enzymes, iron, other vitamin deficiencies? Patients are often less active and become socially uncomfortable. Current therapies do not work well for numerous patients who are just trying to have a better quality of life.

In the several speeches I have given at conferences, I have mentioned almost every item in this study. I’m glad a study was done that affirmed what deficiencies there are treating CP. As I have said before, it isn’t about me, it is about us, the pancreas community. What I have learned, written about and spoke about is what many I have talked to have mentioned to me. I’m glad there are numbers to support the problems. There are some pancreas centers who have not practiced good follow up care, patient surveys or psychological care. Some patients have been left in limbo after surgery, feeling left out in the cold. Now, how the medical community decides to manage this will decide the fate of many post-surgical pancreas patients.

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Hope

Hope

Hope defined by the dictionary

1. a feeling of expectation and desire for a certain thing to happen.     
2. a feeling of trust or as verb – want something to happen or be the case.

Is hope similar to a wish? 

Wish

1.  feel or express a strong desire or hope for something that is not easily attainable
2.  want something that cannot or probably will not happen
3.  a desire or hope for something to happen.

Is a hope or wish similar to a dream?

1.  Dreams   indulge in daydreams or fantasies about something greatly desired.
2.  Fantasize  indulge in daydreaming about something desired.
3.  imagine (something that one wants to happen).

We all hope, some people hope a little more than others. You hear people all the time say they hope that certain things will happen. I hope the meal turns out good. I hope it is warm tomorrow or doesn’t rain. We hope a person arrives to a certain destination safely. I hope I have a good interview for a new job. I hope my lottery ticket wins or I wish I would win the lottery. I wish I had more money. We hope things go as planned. I wish that person would like me. I wish people could just get along with each other. Hope and wish are very much the same, maybe the hope is more obtainable. I hope and wish I would feel better. Today I hope and wish it would warm up and I hope the electric stays on. Of course like many things we hope for, we have to be patient and wait for it. It will warm up again, we just have to be patient. Then we will wish it would cool off.

I have done my share of hoping, wishing, daydreaming, and fantasizing about what life would be like if things would just happen a certain way. Some of the things we hope for can be influenced by our actions. Lots of times hope is used in conjunction with prayer. I hope and pray the surgery goes well. Now we not only hope but we pray God is listening and will answer our prayer. Sometimes no matter how much we hope and/or pray, things just don’t happen the way we would like them.

What happens when you lose hope? Over the past few years, I have hoped for things only to be disappointed when it didn’t turn out like I hoped or wished for. Many of the things I hoped for are related to my health. It is hard to be hopeful at times when life doesn’t work out the way we wanted it to. It is easy to just give up when you deal with many problems on a daily basis. I’ve often wondered how some people can have hope when they have many more problems than I do. Is it their faith? Is it their support system? Is their brain just wired different? Is it just OK to survive each day one at a time?

Christmas is a time for hope! The new year is the time for hope and new years resolutions. Sadly few people follow through on their resolutions for very long.

So what are things that bring you hope? Faith, your family, a new job, friends, your Doctor., nature? I imagine the birds were hoping I would fill the bird feeders this morning.

So as we celebrate Christmas and head into the new year, may all your prayers, hopes, wishes and dreams come true.

Well I didn’t expect that!

What started out as a normal Monday afternoon and evening ended up being a horrible night of pain and suffering. The day was fairly normal, at least normal for me anyway. Thanks to pancreatitis my normal is some abdominal pain and GI issues. I had eaten that day and even had a bowel movement. I don’t remember what I ate but I had been snacking some and didn’t really eat supper. I was having some increase in abdominal pain but didn’t think much about it. Again, that was pretty normal for me. About 6pm it started getting worse. I just figured it was one of my flares and it would go away sooner or later. The pain kept increasing and my mind began to wonder if this was a stronger flare or something else. By 9 pm it was causing me serious discomfort and I was considering going to the hospital emergency room. Going to the ER is the last thing I want to do. The stress of going to the ER of the past 10 years has taken its toll on me. By 10 pm I told myself if it wasn’t better or decreasing by midnight I would go in. By now I was bent over in pain and pacing the floor. By the time midnight came I was curled up in a ball on the floor as I weighed my options on how to get to the hospital. Maybe not the best decision but I figured traffic would be very light so I drove myself. I arrived at the ER and was triaged and taken to a room. A CT scan showed a bowel twisted and blockage. An IV was started and I was given pain meds. When they walked in with a glass of water and a long tube I knew I was in trouble. This meant I was getting a NG, nasal gastric tube that would suck out the contents of my stomach. The hope was that It would also undo the blockage. They put an EG tube in through your nose as you drink water through as straw. As you drink and swallow the tube follows the esophagus to the stomach. They push the tube in to the coaching of swallow, swallow, swallow. It is not a fun experience.

I was admitted and taken to my room. I was NPO, nothing by mouth, IV fluids and my pain was mildly controlled. Nothing really improved over the next 24 hours. Late Wednesday night my pain started to increase again. Pain medications were no longer controlling my intense agony. I was again curled up in a ball in my bed crying. 10 out of 10 on the pain scale, I honestly wanted to die if they couldn’t do something. The doctor thankfully increased my pain medication which took the edge off. I was sent down for another CT scan. Soon after returning to my room, I was informed that I was going to need emergency surgery for a perforated bowl. It was about 2am on Thursday morning and a call had gone out for the on-call surgery team. By about 4am I was being taken to preop and soon after into the surgical suite. I moved over onto the surgical table and that was all I remember. Next thing I knew and remember I was back in my room. I was hooked up to several tubes and wires. NG tube, IV line, O2 nasal cannula, wound vac, catheter, heart monitor, O2 saturation and compression sleeves on my legs meant I wasn’t going anyplace soon. My pain was different now but no less intense. They had cut me open on the same incision as my pancreas surgery. About 10 inches of my small bowel was removed. The surgeon had to cut through the mesh that had been put in to repair the hernia I had in 2017. This created a bit of a challenge for the surgeon and to quote him, “I sewed it back together the best I could.” The surgeon said I had several adhesions which likely caused the problem. I would have to be watched carefully when healing for any complications. It took 25 staples to close my wound this time. A few less than the 43 for my pancreas surgery. I wasn’t going to be allowed to eat or drink anything for a couple of days. The IV was dripping and I was getting 2 different antibiotics. My pain was controlled as long as I get the medication on time. I was very sore and as with any abdominal surgery moving hurt. They wanted me up walking so I would get up a couple of times a day with help and do one lap on the floor. It hurt and I didn’t have much energy but doing it was very necessary. Each day I managed to get rid of a tube or wires. Getting the NG tube out was very welcomed. Finally, I had just my IV and heart monitor left. I was able to get up on my own and walk. I started out on ice chips and moved up to clear liquids the next day. After not eating for a week, jello and broth were a treat. A couple days later I started soft foods like mash potatoes and cream of wheat.

After 9 days in the hospital I was able to head home. Recovery at home by myself was difficult but I managed. I moved extremely slow and very carefully. I struggled with my energy and tired extremely quick. Sleeping at home was a challenge and I had to sit up to sleep as I couldn’t lie flat. Sitting in the recliner was the best place but keeping the cat off my lap was a challenge. I used a pillow to hold on my abdomen and protect my belly. I had a 10 lb. lifting restriction for the next 2 months and was told not to life anything to heavy all summer. I couldn’t drive and had friends take me to my next 2 doctor appointments. As the days went by I slowly improved, was able eat a little better and start gaining some weight back. I had lost 25 lbs. down to 183, lower than what I weight graduating from high school. As of today I have gained back a few pounds and continue to feel better. I’m walking a mile 5-6 times a week. I still do not lift anything heavy but have increased my activity around the house. I figure it will take me most of the summer to recover. I’m thankful for my family and friends who have helped me during this difficult time. From getting groceries, to Dr. appointments, bringing supper, mowing the lawn or just checking in on me, I’m grateful for the people who helped. I’m also grateful for the staff at Marion General for the care I received during my 9 days.

I told someone that this illness and surgery really kicked my ass pretty bad. It certainly changed my plans for the spring and summer. But for almost 10 years now my health has caused many things to change. The struggle physically and mentally has been difficult. The fight continues and even though this knocked me down in whatever round it was, I have got back on my feet and will keep fighting.  

Tears on my pillow

The tears on my pillow that nobody sees

Sadness that falls like leaves from the trees

Each and every night like a clock ready to chime

It always happens right around bedtime

Flowing freely, they stream down my cheek

Streaming from my eyes, there must be a leak

Taking the short path to the pillow on my bed

If you look closely, it makes my eyes turn red

Like a leaky faucet sometimes they drip off my nose

As the gut retching agony reaches my toes

Sometimes the tears, they get caught in my beard

Occasionally I use my hand and they get smeared

Nobody understands the pain I have deep inside

All the years of agony and strain I’ve tried to hide

Some nights the wound is too much to regulate

Tired and exhausted from fighting there is no debate

Many nights it is the never-ending pain

That makes my tears fall down like rain

Other nights could be loneliness that primes the well

Some nights I have no clue what causes this hell

My mind is wound up with thoughts of sadness

Why do I deserve all this horrible madness?

Nobody knows that tears flow at wee hours of the morning

My pillow soaks them up as they come without warning

Falling to the fabric, the tears leave their trail of despair

Sleep is erratic, broken down into a horrible nightmare

Bruised and battered, will my tears ever stop

Or will the storm clouds gather with more rain drops

What happens when the tears stop flowing?

For about 9 years now I have dealt with pain and fighting the unknown. What started out as a physically and mentally demanding illness has now turned into several chronic conditions. The fight is constant and unrelenting. It is more physically and mentally demanding as ever. I write as a way to express myself and what I feel. It is one of my few outlets to this hellish roller coaster I’m on. I’m constantly reading and trying to figure out what would help physically and mentally.

This poem is another to many I’ve written or blogs I’ve posted. If you have known me very long you may have read some of my posts about my battle with pancreatitis and other things that have happened during that battle. One I wrote over 6 years ago was called The CP Roller Coaster. Although my illness and situation has changed some, it still holds extremely truthful today.

I’m posting my new poem and the CP Roller Coaster blog again to show, while things change, they also stay the same.  From the song Circumstances by Rush.

All the same we take our chances
Laughed at by time
Tricked by circumstances
Plus ca change
Plus c’est la meme chose
The more that things change
The more they stay the same

What happens when the tears stop flowing?

What happens when the tears stop flowing?

When the heart has just had too much

When your broken body is out of touch

What happens when the tears stop flowing?

When your mind has become so numb

When your heart has shriveled up like a plum

What happens when the tears stop flowing?

When the soul can’t take any more hurt

When the tears stop dripping on my shirt

What happens when the tears stop flowing?

Hopes and dreams are like tears in the desert heat

They dry up fast, evaporation is complete

What happens when the tears stop flowing?

Years of pain and emotion all bottled up

To much of being called a fuck-up

What happens when the tears stop flowing?

When you’ve lost almost everything and few care

My tank is on empty, no more tears to spare

What happens when the tears stop flowing?

Will the pain and sorrow push me over the edge?

No more happiness, no more joy, standing on the ledge

What happens when the tears stop flowing?

Fighting a losing battle the past few years

Losing the game, there are no more cheers

What happens when the tears stop flowing?

After losing my health, my job, my wife

Convince me it was God‘s plan that fucked up my life!

What happens when the tears stop flowing?

When things in life don’t matter anymore

All your dreams are washed away from the shore

What happens when the tears stop flowing?

The price for taking the blame for too long

The tears are gone, time for the last song?

What happens when the tears stop flowing?

I have run out of tears, the well has run dry

I have nothing left to give, is it time to say bye bye?

The CP Roller Coaster by Dan Spracklen                             July 2014

I’m on a roller coaster that never stops. I love roller coasters and this normally wouldn’t be much of a problem. The anticipation during that first big climb and then the speed and excitement of a 80 degree drop or looping a 360. Next is a turn that pushes you into the seat with a few G’s holding your hands in the air all the time. The 4 minutes of thrill that make you get in line and do it again.

But we are at the amusement park CP, but the park is anything but amusing.

And the roller coaster I’m on is no fun at all.

What do I mean by this? Well I have CP, Chronic Pancreatitis. My roller coaster is pain. I showed up at the amusement park CP and got on the roller coaster about 2 years ago. I didn’t realize it would be a permanent ride that I would beg to get off of. But I’m in the seat and the safety restraints won’t loosen up. I’m stuck with no way out.

The pain is unrelenting and never stops. So where does the roller coaster come in? Just like a roller coaster it builds going up that first big hill. You think it is easing up just as the first loop hits followed by a quick twist. And just like a roller coaster you want to scream out, not in joy but in agony and pain.

My life has become a roller coaster of OK days and bad days. I really don’t have what I call “good” days. Good days are when you have no pain and can enjoy life to its fullest. I don’t have that anymore. Instead I hope for a few hours so that I can get my daily things done before that first big hill of pain hits. Some days are like the new roller coasters, smooth just gliding along. But most are like the old wooden roller coasters that jerk, bounce and rough you up. There is no holding your hands up here, you just hang on and hope it gets better.

My emotions are like riding a roller coaster in the dark. You never can see what is ahead and you just never know when the bottom is going to drop out. It will spin you around and flip you over.

My support is like a roller coaster, some days they are very sympathetic and other days they are not. They do not understand, they are not on the roller coaster.

My sleep is like a roller coaster getting a couple hours here and a couple hours there. It is hard to sleep on a roller coaster.

Going to the ER and Dr. is like a roller coaster. Do they really care and understand what you are saying to them? Will they treat you like a drug seeking alcoholic or like a human being?

So you see going to the CP amusement park and riding the CP roller coaster, is no fun at all.

Thanks to Philip Montelone for the illustration.

The Vase

People are like flowers and a vase. Maybe you found a vase at the Goodwill store or a yard sale. It’s a very nice looking vase and you think of all the wonderful things you could do with that vase, putting flowers in it, putting it on display and making it look pretty. We imagine how beautiful it will look.

So you buy the vase and take it home. But then you discover the vase has been broken and was glued back together. It might have been broken into a few pieces or lots of pieces. Maybe even a little paint was added to cover up the cracks. As carefully as it was put back together the pieces just don’t fit quite right. It has many cracks but you put some beautiful flowers in it. When you add water you discover that the glue doesn’t hold very well and it leaks. Sometimes the water seeps out just a little bit and other times the water leaks out quickly.

The vase normally would to do a great job of holding the flowers and water and look beautiful. But as the water leaks out emptying the vase, the flowers will slowly die. You can keep just adding water but then it just makes a big mess. The water leaking out will ruin other things and cause a mess. We lose hope because of what we imagined it would look like does not come true.

You could buy fake flowers and put them in the vase. They might look pretty but deep inside you know that they are not real. They are just that, fake flowers. Even though the vase might look pretty, it’s broken and can never be like new again or be fixed correctly.

Some people would take the vase and throw it away because it’s not any good anymore. Other people would take the vase and use it for something else and yet some other people would love the vase and be happy with it. Like the old saying one person‘s garbage is another person‘s treasure. Does the vase have a value? Does the vase have any useful purpose anymore? Maybe the vase cannot be used as it was intended but it can be used for something else? Maybe it isn’t good for anything.

Many people have been broken and the pieces have been glued back together. There likely has even been some paint added to the outside to make them look better. Lots of medical people, friends and family may have tried to glue them back together. The appearance may look wonderful on the outside but there are lots of cracks, many leaks in them, the glue didn’t always work. They will never be like they used to be. They’ve leaked a lot of water the past. And just like the flowers without water, you slowly die. Plastic flowers are fake and they cannot put on a fake smile or pretend they are ok anymore. Weather physical and/or mental cracks in the vase, lots of us have been broken. Maybe if you’re really lucky you come across someone who can put the pieces back together in a magical way. Maybe it will look fabulous, work perfectly and hold water again. Some who are fortunate are put back together and able to hold water. Many others will leak. Some are deemed no good and discarded. But the vase will forever be changed from what it once was. We can only do so much to hold the water. Fate, family, friends, doctors and society decide the rest.

5 Years post op update

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.

Tiger won’t play golf again??? OMG

I will probably take some shit over this blog but I got nothing to lose.

First let me say that I absolutely hated hearing the news that Tiger Woods was in an accident. As severe as his injuries were I’m glad he wasn’t hurt worse or even worse killed. I’ve watched Tiger grow up through the years playing golf and admired his game. He’s worked hard for what he’s got and absolutely deserves it. I would love to see him be able to play again at a professional level and compete in the tournaments.

So what is my rant about? Tiger has struggled the last few years with ongoing injuries mainly with his knee or back. It’s well documented every time he has a medical procedure and how this is going to affect him and his golf game. Golf for Tiger is his job. That’s where he goes to work. He’s very good at his job and makes a lot of money. Because he is good he also gets a lot of extra endorsements and such. Is this the end of his job? It might be the end of part of his job but certainly not all of his job. He has many other branches of his job that he can do. He just might not be able to compete at the highest level anymore. And was he at fault for the accident and cause this problem? I don’t know?

I can relate to some of what Tiger is going through. No I was not in a horrible accident involving a car but I still had an injury that cost me my job. It’s been almost 13 years that I injured my knee on a structure fire during a huge snowstorm. Was I at fault for my injury? Nope, it just happened. 15 inches of snow and 2 houses on fire had a little something to do with it. I was just doing my job! Little did I know how that knee injury was going to impact my job and basically ruined my career and my health. Over the course of the next few years I ended up having three surgeries on my knee. Eventually that led to getting cortisone shots which I’m convinced caused my pancreatic attacks. If you don’t believe me look it up, it’s a side effect and the timing was way too obvious two times in a row. Workers Comp knows all however so how can they be wrong? You are just a number and they don’t care. Even sadder yet is that my employer fought against my claim. Thanks for having my back!

So how do I compare this to Tiger, well it basically ended up costing me my job. No more firefighting for me. The bad thing was there were no jobs to go to after that because of my health. It’s been a huge struggle physically and mentally. The pay at the fire Department was good but certainly not anywhere near the range of what professional golfers make. And especially Tiger Woods. He could easily make more money in one week that I would make in 20 years. Needless to say I don’t think Tigers hurting for money. Because I was forced out of my job because of my health I was not able to retire when I wanted to. I didn’t have any endorsements for extra money. Because of all this it caused a lot of financial hardships. The latest one being that I don’t have any health insurance. I’m sure Tiger still keeps his health insurance easily. I’ll trade 2 broken legs for my issues any day of the week.

The whole purpose of this is the frustration of how we idolize certain people and especially athletes. They work hard and deserve what they get. But why is everybody so consumed about him being injured and possibly never playing golf again. He is alive!  Yet it was no big deal for a firefighter to be injured and lose his job. Maybe one day it might even be a firefighter that helped pull Tiger out of the wreckage? What if one of them had an injury pulling Tiger out and it let to them losing their job? What if that injury led to other serious health problems? Who knows? I guess it’s just amazing to me how we put people up certain on a pedestal but yet so many look down upon the firefighters, police officers, military personnel or others. Just get brushed aside and told to smile and make the best of it. I can’t even swing a golf club at this point because of the pain let alone being able to afford a round of golf.

Life isn’t fair, yes I know this well. Yes I still have some anger and bitterness over losing my job and what happened. I’m not sure that will ever go away.

So what are we supposed to take?

With all the “bad” press about opioids on how bad they are for you and you will become addicted to them, turn to street drugs and die, it is no wonder doctors are scared to prescribe them to people who actually need them. Yes opioid medications in the wrong hands, prescribed carelessly or for the wrong reasons can certainly be a problem, no denying that. But what about the percentage of people who truly struggle with chronic pain conditions where other medications and therapies have failed to help? What are they supposed to do? Maybe we turn to “street” drugs? I can’t afford my regular medication; I don’t know how I would pay for illegal drugs.

I just do not feel good. I’m in constant pain, chronic pain. I have struggled to find anything that works as well as these “bad” medications. I’ve tried lots and lots of different medications over the past 8+ years. Nothing has ever worked even close to the opioid medications. So am I a bad or evil person for that? My quality of life at this point is not the greatest. Nothing like spending lots of you day hoping and praying the pain will go away. Lots of us who suffer with this chronic illness could write a book about everything we have and continue to go through on a daily basis, physically, mentally, emotionally and financially. Will it ever stop?

At this point I only have a decent family Dr and a good endocrinologist. No GI that I’m allowed to go to won’t even see me anymore, I’m to complicated. Most doctors I have worked with in my treatment have a very limited knowledge of my condition, tell me to just take Ibuprofen, Tylenol or combination of both. First, they don’t work well for my pain. Second I have been told by to GI doctors that I shouldn’t have Ibuprofen or aspirin because it is so hard on the stomach and GI track. Because I have had major surgery on the GI system, I have been told to stay away from that so that I don’t develop an ulcer or have bleeding from the reconnected areas. Tylenol is almost as bad but can be used in infrequent cases for a headache or such. Tylenol is hard on the liver and that is where my islet cells from my transplant now reside. For that reason the GI experts say stay away from Tylenol as much as possible. So what other options are there?

These are by no means the only things I’ve tried. I’ve also tried massages, acupuncture, yoga, meditation, CBD, medical marijuana and so on. I’ve tried to eat differently and change my diet which certainly does help my diabetes but does nothing for the pain. Just imagine with every bite of food you take the pain increases. That’s pretty much my dilemma at this point on top of several other issues.

Counseling is an option but is limited in my opinion. I have worked with several different counselors and psychiatrist over the past 8 years. Not one of them understands the physical pain and chronic illness I deal with every day. Some try but it is hard for them to grasp the amount of pain. They will say things like “fake it till you make it”, “your mind can override the pain”, “just think happy thoughts”, “you need to have more positive thoughts”. I really wish it was just that easy. Counselling has helped with some things but it does absolutely nothing for the pain. Less stress! Well with my health that is difficult. Imagine the kid in the airplane seat behind you kicking the seat but everytime they do you also get jabbed with a sharp object in the back. Now this never stops! Maybe they get tired for a while and slow down but start right back up again. Stressful, annoying and painful! 24/7. Every time I eat something my pain increases. Going out isn’t exactly a lot of fun sometimes. Add the stress of how I struggle to figure out how to pay for medications, I lost my insurance this year which makes it even more difficult now and I physically struggle to do things around the house. I can guarantee that if you fix my pain, my mental health will improve! What a f-ing concept! But no, they want to give you a bunch of other medications to “change the chemistry in your brain” and make you happy. The side affects of those are just wonderful and add to my anxiety and depression! Shhhhh don’t tell them that, they don’t like to hear that.

Next option, many say turn to God and pray for relief. He sees your pain and understands what you’re going through. You don’t think I started doing this over eight years ago when I first got sick? I’m not so sure about that, if that was true why wouldn’t he do something about it? Why does he let so many people suffer in pain. Trust him and his plan? So his plan was to watch me and so many others suffer? That gets really difficult when there are so many days you can’t see the light at the end of the tunnel because of the pain. And yes I’m talking to and talked to pastors, read many books and the Bible trying to figure this out. God bless you if praying helps you, it just hasn’t helped me much. And please don’t tell me you know exactly what it’s like, what I’m dealing with. No you don’t! Maybe you have something similar but everybody’s different and anybody that has an illness or chronic illness handles it, feels it and deals with it differently. Maybe God wants me to have the pain medications?

People think that I am still grieving losing Karen, yes I am and always will but that isn’t the main issue anymore mentally. Mentally all the above is much harder. I don’t write this blog expecting anyone to change something that will help make it better. I have tried suggestion after suggestion from family, friends, medical personnel and so on. There is a lot of the frustration, there are few good answers. Yes there are days I can fight through it and accomplish some things but it’s always at a price! Usually by costing me much of the next day in bed or on the couch.

I’ve talked before about how this illness and chronic disease has changed me. People don’t like to hear that or want to acknowledge it because it isn’t a good outcome. I don’t like that I’ve become who I am, I’m angry, bitter, hopeless many days but mainly just struggling with pain. Joy is a difficult thing to find most days or it is very short lived. I’m thankful for the support I have from a few people. Many days they keep me going when I don’t want to.

I don’t expect anything to change. Doctors are not going to be allowed to prescribe or be willing to prescribe the proper medications for those of us who truly need them.

So now what?

Mental health day and chronic illness

So I’ve caught some crap this week for posting some things on my Facebook page that apparently got people excited that I may harm myself. The fact of the matter was I wanted to get your attention and apparently that worked for some people. I had a couple people reach out to me and even a couple others to my daughter.

Today is world mental health day. Yes I am struggling. I’m struggling physically, mentally and financially each and every day. Over the past two years I’ve done some very intense counseling sessions which thankfully have helped me get through a lot of the bad times. There is no magic pill that will fix everything. Even if there was it would cost a fortune and I’m sure my insurance wouldn’t cover it. So we do the best we can trying to move forward each and every day without having to retreat much.

Pretty much everything I posted in the last week were song lyrics. Most of the time they just give an expression of how I’m feeling at the time or say something that I’m trying to get across. Yes I have had to deal with a lot of shit the last few years. Honestly it even goes back many more years. But the last few years I’ve been like an avalanche of snow. Everybody at times struggles and how you come out on the other side depends on many factors. The old saying take a walk in my shoes and maybe you can understand better is significant. I’ve said before I don’t expect people to completely understand while I go through but I also don’t want them to judge me because of what I’m going through.

I’m sure we all knew somebody who is struggling. The year 2020 has definitely presented a different challenge and caused a lot of stress. Instead of bitching about he or she or the left or the right why don’t we all just work together to get through it. I challenge everyone to reach out to at least one person each day for the next week, month or even year and just check on them or say hi. Maybe somebody you haven’t talk to you for a while or maybe it’s somebody you know who is struggling right now because of a recent loss, an illness or maybe a job loss. You might be surprised the impact it will have. As those at the Nike corporation would say “just do it “