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.

Advertisement

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

 

$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

Running out of gas

I often wonder how to explain to people what my life is like day to day now. Last night I came up with A great way trying to explain using a gas tank analogy.

Obviously we all know what it’s like to have a full gas tank and plenty of energy to run on. It’s what happens when our gas tank starts to run low and we can’t go as far. Or in a lot of cases we don’t get the mileage out of a tank of gas we had hoped for. Maybe it’s because were in stop and go traffic or heading into a big head wind. A lot of days maybe we only start with a quarter tank of energy or gas and we don’t make it very far before we’ve run out. Maybe we can go fill up our tank and be good to go again or maybe we just have a few dollars and can get just a little bit of gas. A lot of times we think we can get an energy fill up and fill our tank but then we find out that the price of gas has gone up overnight and we only get 3/4 of a tank instead of a full tank. some days may require a high-octane instead of the regular gas. I’ve tried doing a tuneup on my body, my car, to improve the mileage I get. So far nothing is really working well and my body does not get good mileage at all. Maybe it’s time to trade my body in for another one with lower mileage. Too bad that’s not possible.

So what happens on days we cannot fill our gas tank up? Today is one of those days where I have zero energy again. My gas tank is completely empty and running on fumes. I wish it was just as easy as pulling into a gas station and filling my gas tank up but it doesn’t work that way. I wish it was just as easy as getting something to eat but sometimes that makes it worse.

Just like your car and filling it up at the gas station, it gets frustrating when the gas prices are high. Or maybe you need new tires or need to get some major work done to it. It all costs money and it takes a toll on you. We just can’t buy a new body.

Unfortunately most of my days are like the song from Jackson Browne, running on empty. Where is the closest gas station and I hope I have enough money to get some gas.

Alex Trebek

I like almost everybody was shocked to hear the news today about Alex Trebek and his diagnosis of stage 4 pancreatic cancer. My first thought was how, what, why can this happen to somebody like that? But the simple fact remains, this disease does not discriminate against anybody. It affects every race, every gender, young and old.

Everybody can sit here and hope and pray with everything we’ve got that Alex survives. But the fact of the matter is he’s going to have one huge battle ahead of him.

Right now the survival rate for pancreatic cancer is between 7 and 8% at five years. Of the 92% who will die from this, most will die within the first year. It’s one of the worst survival rates for cancer.

Why is pancreatic disease so devastating? First of all it is extremely difficult to detect. The biggest problem is by the time symptoms appear the disease is already well advanced. Many patients present with pancreatitis. This is extremely painful. A lot of people pass this off as indigestion or stomach pain from something else. Sometimes the doctors do not take the symptoms seriously. All the tests and scans, although good, they are limited in what they can see.

To learn more about pancreatic cancer and pancreatic disease, please visit the NPF website at https://pancreasfoundation.org/patient-information/pancreatic-cancer/

#HopeAndCourage