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/



Questions for the pancreas community

Over the past 4 years the Ohio Kentucky chapter has been working to put one events and such to help bring education, awareness, hope and support to those who suffer from pancreatic disease.
We have had several education events in Columbus and Cincinnati. We have had galas, bowling events, picnics and support groups. The education events offer a great place to learn more about the disease and the options you may have as a patient. Some of the events have a great turnout and others are a complete flop. Our Gala last September was a huge success. I’ve been at events where you can actually talk to the Doctors one on one and no patients show up. Education events, the picnic and support groups are free! All you need to do is show up. The Galas are a huge fundraiser and do cost money to attend. What has happened however is that some of these events are not attended very well. It can be discouraging when an event is planned and very few or nobody attends it. A lot of time and money goes into these events and takes a lot of work from the people who organize and run them.
What we need to know from those with pancreatic disease is, what do you want? Do you want education events? Do you want support groups? I hear from people all the time that these events are needed but attendance lacks.
Fundraising is the evil necessity we must do to raise awareness, educate, give hope and support those with this disease. It provides money for research. It also allows us to educate the doctors which is a huge problem almost everyone complains about. What kind of fundraising would you like to see? What kind would you attend?
Quite simply, we need your support. If we are going to succeed as a chapter and promote the things talked about, we need your support. We understand the struggles with the disease physically, mentally and financially. But at the same time if things are going to improve, we need your help along with your family and friends.
This weekend is our NPF Chapter retreat where we will learn skills and trade ideas for such events. Please let me know your ideas you think might work and how to get people to attend. You can reply on my FB post or message me directly. You may also email at npf_ohky@pancreasfoundation.org
Our next support group for Central Ohio is March 21 at 6:30pm. It is located at 45 River St. Delaware Ohio. Everyone is welcome.

Pills, politics and Bull shit

I’ve stated my thought on a lot of things before and some of them are a little controversial. Today I’m going to give some thoughts on a very touchy subject. The opioid crisis!
Is there really an opioid crisis or is it made up? Who do we really believe? I don’t deny that people abuse drugs and opioids are one they abuse. I went on plenty of overdoses in my career at the fire department.
Why do people turn to opioids and abuse them? Why are they given opioids in the first place? Do taking opioids for pain control in chronic illness really make people addicted and increase overdoses? There is lots of debate to these questions. We need to separate facts from fiction. That is a hard thing to do. What numbers do we believe? Are the numbers truly accurate? Plenty of other prescription medications can cause an overdose and person to die.
Proven fact: Pancreatic disease is one of the most painful diseases you can have. I won’t even mention all the other problems it creates! If you follow my blog you already know them.
People with a chronic disease need pain control. If something works why not use it? Most Doctors are scared to give it to patient. Why???? Because politicians and others have made laws punishing those who “might” prescribe it to much. What is to much? I’m in pain and nothing else helps. What am I supposed to do if I can’t get pain control? Turn to street drugs? Wouldn’t it be better to have a patient on medicine controlled by a doctor? Pain management? What role do the drug companies play? Did they create this mess?
Doctors are scared that someone might get “addicted” and it would look bad on their record. Forget that fact that the patient is in horrible pain. Just to remind people!

Again, pancreatitis is some of the worst pain you can have! We have all be labeled drug seekers me included. Emergency room doctors, hospitalists, family doctors, specialists all do it. Because I take pain medications and have a disease that isn’t widely known, I and many others have gotten and get the label.
Why are we punished for having pain? It is hard enough for us to live with, why make it worse? Is it better to lay in bed all day in pain with no medication or give us something that helps and allows us to function some? The famous, “It can’t be that bad” or “just take some Tylenol” is heard everywhere. I seriously what to punch the next person who tells me that. I remember very well the first time I was labeled a drug seeker by an ER doctor! Mad is an understatement.
If the people who are against pain medications could just live in our shoes for a while, they would change their minds! Let them feel the pain we deal with. Let them lay in bed or curled up on the floor in a ball begging for relief.
Alcohol kills more people then overdoses each year! Why isn’t there an outcry to ban alcohol? Because of the money it makes? Socially acceptable? Do we ignore the problem? We all know it is a problem but continue to consume it. Automobile crashes kill far more then overdoses. We need cars to move! We accept the risk of traveling by automobile.
Believe what you want about the opioid crisis. I don’t know what to believe. But the fact remains, those with pancreatic disease need pain medications. Let us decide what works best! Don’t judge us unless you have been there! What could we judge you about?

Prisoner to the insurance!

On January 1 this year my insurance changed. Our coverage by the Ohio Police and Fire Pension would stop. We had been promised that we would have choices with our health insurance, and we would receive a stipend each month to help for the premiums and other costs. As of today the change has been nothing short of a disaster for many retirees me including myself.
With all my health problems, it is important to keep up with Dr. appointments and take my medications as prescribed. Having the TPIAT (total pancreatectomy with islet auto transplantation) requires a unique team of specialists. I have many other health issues which require me to seek care and treatment on a regular basis. Diabetes, GI issues, anemia just to name a few.
I only had one choice for health insurance. The plan limits me to only go to OhioHealth Network. No exceptions or choices. I lost my choice to go to Ohio State where all my specialists are for my health problems. Ohio Health doesn’t have some of the specialists I need. Getting referrals has been a nightmare. I truly feel like nobody is doing their job or they just don’t care. One office says they have sent them, the other says they didn’t get anything, one office said they are not excepting new patients and so on. So for 6 weeks I’ve been trying to get doctors. Everyone says keep calling. Believe me I do! Very soon I will not have any prescriptions left to fill and no doctors to write new ones. Maybe that isn’t such a bad thing as they are very expensive anyway!

I have said that my health is already suffering because of this health insurance change. I’m already stretching my meds as far as I can. I take less insulin so I can make it last longer. Instead of changing my insulin pump reservoir and tubing every 3 days like I’m supposed to, I make it last a week or more. I take fewer enzymes that digest my food.
I never thought I would become a prisoner to my health insurance. My choice of doctors is one network. Because of the limited network I now have, I do not have any health insurance coverage if I travel away from the area or out of state. If I need medical care of any kind away from the OhioHealth Network, I’m screwed! I will have to pay for it myself. It scares me to think that it could ruin me financially if I need care. I’m slowing circling the drain anyway. Do I take a chance? Do I just not go if I need medical care? How is this freedom and your right to choose?
It took weeks for me to get my stipend money and the process to get the money has many steps. It is still a lengthy process to get your money.

In the past 5 years I became an advocate for those with pancreatic disease like myself. I took on the role of chapter chair for the OH/KY Chapter of the National Pancreas Foundation. I have spent 5 years raising awareness, supporting and educating about this disease. Now I will add fighting for our rights that the OP&F has taken away from us.

I’m sort of lost right now, not sure what is going to happen. I don’t see it getting better anytime soon.