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 “

Confidence in medicine?

OK I know medicine is a practice. Many times it is an educated guess of what is going on. Believe me over the last 8 years, they have guessed many times what is going on with my body. I do a better job guessing. I understand they don’t know everything.

I decided to write this blog because I’ve heard to many stories about misread cat scans, not reading the charts or not listening. Yes I have had this happen to me while in the hospital or at an office visit. I had yet another friend tell me that after having a CT scan, they were told they still have a pancreas and or spleen even after having them completely removed. According to the report, “the pancreas looks normal”. “Spleen is unremarkable”.  Makes you wonder what they are looking at. CT scans are not a great way to look at the pancreas but to claim the pancreas and spleen are still there??? One doctor claimed that they can grow back??? Hummmm. I know the liver can regenerate but I can’t find anything about the pancreas or spleen regenerating. Most people who have pancreatitis get a CT scan. If you have more issues you will get an EUS, Endoscopic Ultasound. Even this way of looking at the pancreas has limitations but is supposed to be the best way to see the pancreas. My EUS was a great example of that. It showed no damage but when I had the operation to remove it, it was severely damaged.

I guess the thing I wonder is, what are they looking at? Because how they treat you depends on many tests or scans, misreading them can cause big problems. I had my pancreas taken out but the doctor reads the CT and it says I have one. Well what is the Dr. going to think and believe? Gone are the days when most doctors would take an interest in your condition and help figure it out. If you have multiple problems, you will have multiple doctors and in todays world of electronics you would think they could communicate. My experience is they don’t or they will say it isn’t my specialty.  Hospitalists that don’t read the chart let alone know anything about your condition. Prescribe a medication one day and ask why you are on it two days later. Most of them won’t listen to you. Visit the doctor office and you get your 15 minutes and out the door you go.

This is not to bash or say all medical people don’t do their jobs. I have many friends who work in the medical field and do a fantastic job. As I get older and deal longer with chronic conditions the less confidence I have in how things are done. Is this because of the direction medicine is going? Sadly the almighty dollar I believe plays to much of a factor in the care you get and how much medicines cost.

4th Anniversary

So today is my anniversary! Not marriage or work. It is the anniversary of my mom passing away in 2012 and is also my son in laws birthday. For me it is the anniversary of my body taking on a new identity. A day that forever changed my physical and mental aspects. August 1, 2016 was the day of my TPIAT surgery. The Total Pancreatectomy with Islet Autotransplantation.
Because of Acute Pancreatitis that turned into Chronic Pancreatitis, it was discovered I had a mutated gene and Hereditary Pancreatitis. The worst part of this disease is the absolute worst pain I’ve ever had in my life. I spent many days curled up in a ball in agony. Eating was the enemy. No medication would take away the pain completely and only for a short time. With few options to treat or cure this, I decided on and convinced the doctors on the above surgery as my best option. Described as a complex surgery it involved removal of my pancreas, spleen and duodenum followed by extraction of the islet cells (insulin producing cells) and infusing them into my liver. The hope is that the islet cells will take hold in the liver and produce enough insulin that I would not be diabetic or less dependent on insulin shots. After the surgery there is any possibility from being insulin free to a brittle diabetic. There is no way of knowing before the surgery what the outcome will be. I am a diabetic with an insulin pump put my pain has been reduced. Taking out the pancreas means it is necessary to take enzymes for the rest of my life. Reconnect all the plumbing and hope. For me it was a 10-hour surgery. I spent 48 out of the next 54 days in the hospital. Recovery has been long and painful with more hospital stays and lots of ups and downs. I never recovered fully but rather hit a plateau and likely will not get any better. I still have pain albeit less than before. I have digestive problems that can change in an instant and complicate my day. One of my biggest issues is lack of energy. I do not absorb nutrients the way I should now. I have had to do iron infusions and take lots of vitamins to help maintain my levels. I seem to be in a mental fog much of the day for some reason. It’s interesting that I think and many people I talk to who have had the surgery talk about they are not as sharp mentally after the surgery. I was diagnosed with PTSD, anxiety and depression. Diabetes is its own monster that I could write a 100-page blog on.
Nobody plans on getting sick, an illness or chronic condition that will completely change your life. Yes most of us have medical insurance, life insurance, etc. But what happens if you get sick and can’t work? What happens if your insurance changes? What if your spouse or family doesn’t offer good support? What if you lose everything you have worked for? What if you just wanted to die? I have lots of emotions when I think about all the things I have been through over the past 8 years of health problems. So many things have happened that changed me. I remember well the list of pros and cons I made to have the surgery. I had a long list of pros as I compared it to my job as a firefighter. My pancreas was smoldering, I wanted to put it out before it burnt out completely. I have never regretted the surgery even if I have struggled at times. It was a gamble that I would do again.
I think for me the hardest part has been accepting my illness and what it has done to me. The disease cost me my health, my job and so many other things. I admit I’m still angry and bitter about getting sick and how it affected me. I get frustrated when people think I’m doing great. They think I should be able to carry on a normal schedule and do normal things. Nobody sees the internal battle I have with my body every day. The scars I have go much deeper than the long scar I have on my belly. I am constantly thinking if my pain will get better or worse, about the number of carbs in food, is my blood sugar going high or low, did I take my enzymes, do I have enough energy, if I do something what will I feel like afterwards, will I be in pain, do I have enough money to cover the cost of things, is there a bathroom near? What could have been if I hadn’t gotten sick? Even though some people question it, I have worked hard to overcome all the setbacks I’ve had physically and mentally. I have tried to deal with and overcome it several ways but still have trouble doing that. I have done counseling, prayed, talked to a couple of friends and read a couple of good books that have been helpful. I have questioned God and my faith, why did this happen to me???? What did I do to deserve this?? Why can’t he fix it? I still have many days I just want to drive to wherever and get away from everything. There are many days I want to crawl under a rock and stay there hoping someone lifts the rock from me. There are days that start off okay but end up disastrous.
I have talked before about my health insurance change and how that has negatively affected my physical and mental health. My last blog talked about how expensive it is to keep me alive. I wonder what will be in store for me down the road. Will my health get better, stay the same or get worse? Will my mental struggles get better or worse? Will my chronic conditions break me financially? All questions I don’t know answers to but will have them in the future!



$89.63, is that a lot of money? What could that number mean? Would you agree to take $89.63 a day for the rest of your life? That is the equivalent of $627.41 a week or $32,715.00 a year. Over the next 20 years that would be $654,299. Not a bad amount. So, what does that amount of money mean to you? What could you buy with that? If you bought a lotter scratch off ticket every day for $10 and won $100 on that ticket each day, net $90, you would be happy if not overjoyed.
Now let’s turn those numbers around. What if you had to pay out $89.63 a day, $627.41 a week or $32,715.00 a year? Buy $90 of lottery tickets each day and you don’t win anything. At least you don’t win any money to spend. Doesn’t look so good now, seems like that is a lot of money.
So what are those numbers? $89.63 per day $627.41 a week or $32,715.00 a year. That is the cost of my medications and supplies to keep me alive. That $90 a day buys Insulin, Enzymes, other prescriptions, tubing, test strips, glucose sensors, and more. $90 a day for the rest of my life! Thank you Chronic illness! Of course that will go up each year. Does that seem excessive? Could you afford that? That doesn’t include doctor visits, lab work or hospital visits. Considering 4 years ago when I had my TPIAT surgery, my bill from the hospital was over $600,000 for surgery and hospital stay. The cost per day that year would have been much higher. Just for $600,000 it would be $1,644 a day.
Thankfully I do have insurance which does cover part of that. My part will be between $6000 and $8000 this year depending on a few factors. Is it worth it? Some people would joke, nope! If this is you the answer for most of us would be yes! What are we worth to keep alive? Is there a limit to keeping someone alive? How much are we willing to spend. I’ve mentioned before that contrary to believe, human life is not priceless. I’m sure there are others out there who could add up their costs and it might be higher but I only know my numbers.

It is a little scary when you add everything up. Health care is expense anyway you look at it. I didn’t plan to have a chronic illness, does anyone? It is just a simple reminder that things can change fast with your health. Can you afford it?

Go ahead, Cut your own throat!

OK I’m just shaking my head.
In this time of confusion and risk of Covin 19, I don’t understand where some people get their thinking.
Yes we need to get the economy going by getting people back to work. I get people are under financial stress and businesses are going down the drain with each day we stay in lock down. I want to get things going again, get the stock market back up! I want normal.
For my firefighter friends, brothers and sisters who are on the front line fighting this, why are some of you not taking this serious????? I see facebook posts like nothing is going on. I’m here to tell you the longer this virus is around, the more havoc it will cause with everything. But let’s hit you where it hurts, your bank account. Do you want to cut your own throat? City, township, county and state budgets are being wrecked right now. The longer this illness goes on, the longer we have restrictions of some sort. People are not working so governments have less taxes coming in. Guess who will be first to get laid off? YES you the firefighters. Always happens when money is short.
Pat yourself on the back right now for doing a great job. I’m proud of what I did and proud of those fighting this fight now. After we go back to “normal” people will forget all about your sacrifices you make during this pandemic. You will become a overpaid burden on the tax payer again. History! It has happened many times. Firefighters were the most wonderful people in the world after 9-11. That didn’t last long. The state and federal governments don’t care and won’t help much if any.
People don’t understand what it is like to respond with a 2 man engine or 2 man medic. Pull up on a working fire with people trapped with 7 person crew. We show up! They don’t care how many we show up with. The fire truck is there. But you should care! You should care if your brother and sister firefighters get sick. You should care that your family could get sick. Quit being selfish!
I am isolating the best I can. I have no spleen, I’m diabetic, I have low Vit D, low iron. I’m high risk. I’m already depressed and have anxiety. Do you just want to write me off? Does my life mean anything? Some people would say losing some lives to get the economy going is ok. If you think that way, kiss my ass and unfriend me now. All lives matter. I guess the old saying, “Life is Priceless” doesn’t hold true?
I want to get the economy going again but at what cost? I want normal again but at what cost? I want to go to both my nieces weddings, go to the UP of Michigan and be able to shop freely.
Obviously we all will not agree on the best way to make this happen. We don’t have to agree!!!!! Make some little sacrifices! We just have to work together and get it done!

Crazy times

It has been a while since I have posted a blog. So out of boredom and the need to keep busy, I am writing this today. Lucky you!

The past few weeks have certainly been a very different and trying time for the world. One of those hopefully “once in a lifetime” events that will soon leave as fast as it came. By the way it sounds it may be a while and we can hope and pray for different. The information we get daily changes as they learn more about it.

Dealing with chronic health problems now puts me at a higher risk if I contract Corona 19. I could have serious complications, the worst being death. Many of the people I know because of my journey with pancreatic disease have the same issues. Many have diabetes and/or a compromised immune system. This is my case and why I have isolated myself as much as possible. I avoid all contact with people and when I get my groceries delivered or loaded into the car, I wipe everything down. Am I being over cautious? Maybe? I don’t think so. I joked a couple months ago when this virus was just starting to spread in the US that many of us already take precautions everyday because of our chronic conditions. I already wash my hand frequently, carry hand sanitizer, I’m cautious who I’m around if anyone is sick. Last fall I didn’t see my daughter and her family for almost weeks because they were sick and I stayed away from them. So I’m at 2 weeks of isolating myself from things. I joked that us “country folks” are better prepared for things like this because we are used to being out in the country and losing electric, getting snowed in or whatever. Just my opinion. City people have all the conveniences very close by. Lots of us have a reasonable supply of TP, water, canned goods on an everyday basis.

Thank you to everyone who is out there on the front lines of the battle and continues to work at their jobs. Please stay safe.

I’ve heard people comparing this with the Great depression or 9/11. I really don’t think you can compare them. Totally different times and what caused the problems are different. But lessons can be learned from all of them and applied.

Over the last 18 months or so I have struggled with some depression and anxiety. Thankfully I learned some great skills how to deal with that and I’m going very well now mentally. Keeping oneself going mentally during this time is a challenge. I encourage anyone having problems to get some help or do what you can to make things better. Physically I’m OK. I still have the normal issues I’ve had for a long time now. Abdominal pain and nausea especially after eating. Fatigue is still a huge issue. Absorbing nutrients continues to be a problem also.

So things are what they are and we will make the best of it. I’m asking everyone to please do everything you can to practice what they are saying to help end this. We all know someone who at high risk. We all want to get back to a normal life as soon as possible.

#WashYourHands #PracticeSafeDistance