Why is life worth living?

kirk89gt

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Thank you, amazing! Unfortunately, my current doctor is an incompetent, lazy ass MF so won't do anything other than necessary. Long-term it's going to be incredibly beneficial to be with a new Dr. Unfortunately, UnityPoint doesn't have anybody to take on the cases, or even support existing claims, so they don't have a Plan B for me.

I'm working on the second option. I called UnityPoint and pulled a "Jeren" and asked to speak to the practice manager. I broke down and shared my concerns and asked for an immediate referral to a specific dr at Mercy One that seems perfect for my issues. She was kind enough to get that out the door last night. This AM I reached out to Mercy One and was desperate to get an appointment ASAP. That way not only could I possibly get seen once, but I may be able to get them to allow 2 apts so we have more rapport and history.

Just hit like a skyscraper landing on my head. My whole career has been in Insurance so I know the good, bad, and evil.
Another option I forgot to mention…….

You should be able to have your primary care physician complete the paperwork as well. There may be some more back and forth this way but it would at least get the conversation started, which is important.
 

FriendlySpartan

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Thank you, amazing! Unfortunately, my current doctor is an incompetent, lazy ass MF so won't do anything other than necessary. Long-term it's going to be incredibly beneficial to be with a new Dr. Unfortunately, UnityPoint doesn't have anybody to take on the cases, or even support existing claims, so they don't have a Plan B for me.

I'm working on the second option. I called UnityPoint and pulled a "Jeren" and asked to speak to the practice manager. I broke down and shared my concerns and asked for an immediate referral to a specific dr at Mercy One that seems perfect for my issues. She was kind enough to get that out the door last night. This AM I reached out to Mercy One and was desperate to get an appointment ASAP. That way not only could I possibly get seen once, but I may be able to get them to allow 2 apts so we have more rapport and history.

Just hit like a skyscraper landing on my head. My whole career has been in Insurance so I know the good, bad, and evil.
Sorry that I didn’t see this update until now, there are a couple options at your disposal and a couple things you might want to dabble in.

1. With your switch to hospital systems make sure their EMR systems talk to each other. If not that can mean a whole new battery of tests they have to run you through just to get a baseline. This should also include any notes from appointments in addition to just testing results. With this info you won’t need to start from scratch but if the systems don’t talk then you need to start planning for that asap. I would recommend reaching out to the new medical group for this information

2. Even with the specialists backing LTD doesn’t automatically go through so it’s a good idea to have your primary also be involved. If they are part of a bigger group they might even have staff specifically to help you with this process.

3. I know you’re heavily involved with the Parkinson’s community from our conversations. They might be able to help refer you to pro bono legal services or other pathways that can help smooth out the LTD process.

4. While your current neurologist is leaving in July can you establish care with your new facility before then? Not sure on your insurance situation/options but I strongly recommend having your first appointment with your new provider while you current one is still practicing because once that guy leaves it’s going to be real hard to get in contact for any help.

5. Search out for other LTD legal groups that can help, don’t know if ISU has a law school or if their is one local but that can often be another avenue to go through. Lots of non profits out there as well that could possibly help.

Best of luck man and appreciate everything you do and have done.
 

JayV

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I don't know anything about insurance or moving from one provider to another, so I appreciate the people who do giving their thoughts and advice.

Jeremy, I read your posts on CycloneFanatic and I follow you on other online sites where you sometimes comment. I appreciate your humor as well as your honesty and openess during the difficulty you're currently facing.
So, thank you. And keep kicking ass. Being down sucks, but it makes the comeback story awesome.
 

JP4CY

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Thank you, amazing! Unfortunately, my current doctor is an incompetent, lazy ass MF so won't do anything other than necessary. Long-term it's going to be incredibly beneficial to be with a new Dr. Unfortunately, UnityPoint doesn't have anybody to take on the cases, or even support existing claims, so they don't have a Plan B for me.

I'm working on the second option. I called UnityPoint and pulled a "Jeren" and asked to speak to the practice manager. I broke down and shared my concerns and asked for an immediate referral to a specific dr at Mercy One that seems perfect for my issues. She was kind enough to get that out the door last night. This AM I reached out to Mercy One and was desperate to get an appointment ASAP. That way not only could I possibly get seen once, but I may be able to get them to allow 2 apts so we have more rapport and history.

Just hit like a skyscraper landing on my head. My whole career has been in Insurance so I know the good, bad, and evil.
Man, I have no idea what people do in smaller communities if it's this difficult in a large one.

Hang in there.
 
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clonedude

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I’ve been pondering more and more about the OP’s question lately. I still feel I’m okay…. but what is life all about? Work at a job you don’t really like all day, and sleep…. and wait for the day you die??
 

Jer

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Thanks all for the comments. @FriendlySpartan I ran with a few options after getting grounded again, thank you.

Update as I had my current Neurologist appointment yesterday.

While still hopeful the new doctor will get my case review completed so we can get scheduled (looking like it won't be in time), I was able to use my career experience in benefits administration and insurance policy admin system design with CMS requirements one last time!

I twisted the insurance company's arm to move up the claim processing to when our current doctor should still be able to help. There's wording in the policy (actually a lack of a couple words in one specific section) that I was able to exploit. Yes, there are normally tons of reasons to delay the LTD process until close to the effective date, but Parkinson's is a one-way road and should be treated just as they would a terminal illness (i.e. ability to work won't magically come back in 2 months).

At our apt yesterday, my current dr believed the timing should still work... should. I gave them a few options, got some pushback, but ultimately didn't give up and pulled out the "Jeren" mode. I got some commitments after a while.

I also requested my complete records be sent over to Mercy, not just the normal chart transfer. It needed to include all prior testing (third party or not), results, imaging interpretations, narrations, etc. They said they can't do certain things... I said oh but you can, you have to support CMS's stupidly complex regulations around HL7 FHIR system capabilities for the portability of that info - of which I know the logic, XML standards, and API endpoint requirements. They called the main office, who contacted IT, and oh yeah they can do that, lol.

I think things are looking up. Shouldn't take pushing back so much, but if it works, you can call me Jeren all you want, lol.
 

Jer

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I’ve been pondering more and more about the OP’s question lately. I still feel I’m okay…. but what is life all about? Work at a job you don’t really like all day, and sleep…. and wait for the day you die??
You and me both. Hopefully you are in a place where you aren't questioning because you're asking "is it worth it". Because the answer to that is absolutely "YES". Why it seems so "mechanical", tortured, or scripted is something we'll never know. But YOU are worth it.

I'm not a religious person and more scientific, but have to cling to the hope that there is something after.

As we work to determine if I have just Parkinson's or also MSA, I've done a lot of thinking about this. Parkinson's isn't terminal. MSA has an expiration date of 6-8 years. So the difference has created all sorts of thinking, anxiety, etc.

The only way I'm finding to get through it is to think of the micro view, not the macro view. Focusing on the journey, not the destination. Whether we have another 1 day or 50 years, each day has to be it's own focus. But, I also have found I need to have a mission, or goal.

If I focus on the destination, I find myself swirling down a rabbit hole of dispare. Will anybody remember me? Did I really do everything I could? Was I the best husband possible? Was I the best dad I could be? Unfortunately, I go back to that thinking about every 4 or 5 days because of Bipolar.

Here's what is working for me. My biggest fear is when I go, my family moves on and forgets me. My wife falls in love with a new man, and due to recency bias, that's what she remembers the most. No longer would I have my life-long partner since age 15 occupying the space next to me for eternity, but an empty plot of loneliness. If there is an afterlife, I'd be all alone.

So, I needed a mission or purpose. I found 2;

I have to live (selfishly) long enough my wife doesn't want to move on after I go:)

There's obviously also the aspect of being here for my kids which have similar mental health conditions and I'm uniquely able to connect and help them through life.
 
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FriendlySpartan

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I’ve been pondering more and more about the OP’s question lately. I still feel I’m okay…. but what is life all about? Work at a job you don’t really like all day, and sleep…. and wait for the day you die??
Doesn’t work for everyone but I try to do at least one thing every day that brings me joy/happiness and also to make myself aware of it and be grateful. Can be as simple as taking some time to read a new book, watch a new episode of a show you are enjoying, take an hour to connect to an old friend, play with a pet or family. It all works even something as simple as cooking or ordering your favorite meal.

It’s super easy to feel like the days are a never ending grind, been to some dark places myself during covid and the above helped a lot. Talking to people about what your feeling can also help but as you mentioned you do feel like your doing ok.
 

cyclone4L

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Jun 30, 2013
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I’ve been pondering more and more about the OP’s question lately. I still feel I’m okay…. but what is life all about? Work at a job you don’t really like all day, and sleep…. and wait for the day you die??
 

clonedude

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Apr 16, 2006
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You and me both. Hopefully you are in a place where you aren't questioning because you're asking "is it worth it". Because the answer to that is absolutely "YES". Why it seems so "mechanical", tortured, or scripted is something we'll never know. But YOU are worth it.

I'm not a religious person and more scientific, but have to cling to the hope that there is something after.

As we work to determine if I have just Parkinson's or also MSA, I've done a lot of thinking about this. Parkinson's isn't terminal. MSA has an expiration date of 6-8 years. So the difference has created all sorts of thinking, anxiety, etc.

The only way I'm finding to get through it is to think of the micro view, not the macro view. Focusing on the journey, not the destination. Whether we have another 1 day or 50 years, each day has to be it's own focus. But, I also have found I need to have a mission, or goal.

If I focus on the destination, I find myself swirling down a rabbit hole of dispare. Will anybody remember me? Did I really do everything I could? Was I the best husband possible? Was I the best dad I could be? Unfortunately, I go back to that thinking about every 4 or 5 days because of Bipolar.

Here's what is working for me. My biggest fear is when I go, my family moves on and forgets me. My wife falls in love with a new man, and due to recency bias, that's what she remembers the most. No longer would I have my life-long partner since age 15 occupying the space next to me for eternity, but an empty plot of loneliness. If there is an afterlife, I'd be all alone.

So, I needed a mission or purpose. I found 2;

I have to live (selfishly) long enough my wife doesn't want to move on after I go:)

There's obviously also the aspect of being here for my kids which have similar mental health conditions and I'm uniquely able to connect and help them through life.
Yeah, I feel it helps me to have something on the schedule to look forward to. Maybe I won’t be able to do something I enjoy every day…. but as long as I have something on the schedule ahead to look forward to doing…. that helps a ton!
 

bellzisu

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I’ve been pondering more and more about the OP’s question lately. I still feel I’m okay…. but what is life all about? Work at a job you don’t really like all day, and sleep…. and wait for the day you die??
Sorry you feel that way.... Kids, family, and friends get you through. My kids are active in everything they can from sports to livestock shows to cycling. Something planned all the time. When we get moments we visit family in Nw Iowa. I make time cycling with friends weekly.

You find things that matter and enjoy them. Have some faith in things. Probably not what you want to hear. I'm afraid of dying... I want to be here forever for family and myself selfishly. But I do believe there is something more after this life.

Wish you the best man.
 

1SEIACLONE

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With all the death my family has been faced over the past 5 years, I have really come to the conclusion that you have to live everyday to the best of your ability, and when its your time, its your time to go. Not a religious person myself, but I do think there is something on the other side, what that is, I have no clue. It is a sick joke if this is all there is and then you go into the ground, with nothing more than that. Kind of depressing really.
 
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Jer

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Yeah, I feel it helps me to have something on the schedule to look forward to. Maybe I won’t be able to do something I enjoy every day…. but as long as I have something on the schedule ahead to look forward to doing…. that helps a ton!
That's huge. Exactly like me. If there isn't something to focus on in the future, why need a future? Keeping things out there, even if somewhat small, helps a ton.
 

Jer

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I hope everybody is doing good as we head into better weather and more sunshine.

Update/ Venting - feel free to ignore...

Mercy One Ruan Neurology denied our referral as the symptoms, conditions, and progress are better handled by the University of Iowa's Advanced Neurology Center. Of course the logistic issues are going to be a royal pain in the ass, but the bigger stresser is the prospect of MSA.

The big concern is if the diagnosis is going to remain Parkinson's Plus or Parkinson's Plus with MSA (Multiple System Atrophy).

While Parkinson's Plus is a lifelong prison sentence in hell, MSA is a death penalty with a 6-8ish year expiration date. If it were MSA, we would probably be on the lower end of that range based on timing and progress. If not, then we have hope of continuing to manage symptoms for a longer life.

Obviously very different prognosis and anxieties between the two. Scared to death of the MSA option as I want/need to be here for the kids. They have all my mental health issues and I can uniquely connect with them to help them navigate the challenges past, present, and future. I'm terrified of not being able to do that, and thus fail at the one thing I was put on this Earth for - to be the best dad I could be.

When does Football start again?
 

jsb

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I hope everybody is doing good as we head into better weather and more sunshine.

Update/ Venting - feel free to ignore...

Mercy One Ruan Neurology denied our referral as the symptoms, conditions, and progress are better handled by the University of Iowa's Advanced Neurology Center. Of course the logistic issues are going to be a royal pain in the ass, but the bigger stresser is the prospect of MSA.

The big concern is if the diagnosis is going to remain Parkinson's Plus or Parkinson's Plus with MSA (Multiple System Atrophy).

While Parkinson's Plus is a lifelong prison sentence in hell, MSA is a death penalty with a 6-8ish year expiration date. If it were MSA, we would probably be on the lower end of that range based on timing and progress. If not, then we have hope of continuing to manage symptoms for a longer life.

Obviously very different prognosis and anxieties between the two. Scared to death of the MSA option as I want/need to be here for the kids. They have all my mental health issues and I can uniquely connect with them to help them navigate the challenges past, present, and future. I'm terrified of not being able to do that, and thus fail at the one thing I was put on this Earth for - to be the best dad I could be.

When does Football start again?

I know the change in diagnosis (if it does change) is super scary. But there are good things about knowing.
 

Jer

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I know the change in diagnosis (if it does change) is super scary. But there are good things about knowing.
Thank you, I need to keep reminding myself that.

Even though I worry about anything and everything to the breaking point, I'm somewhat comfortable as I don't want to believe MSA is a factor. I could be very wrong, but there's some new/foreign voice inside of me keeping me relatively calm on that. I don't know how the **** that happened, but I'll take it:)

On the flip side, hallucinations and feelings of a disconnect from reality are hallmark signs of MSA, so what the **** do I know, lol.
 
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jsb

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Thank you, I need to keep reminding myself that.

Even though I worry about anything and everything to the breaking point, I'm somewhat comfortable as I don't want to believe MSA is a factor. I could be very wrong, but there's some new/foreign voice inside of me keeping me relatively calm on that. I don't know how the **** that happened, but I'll take it:)

On the flip side, hallucinations and feelings of a disconnect from reality are hallmark signs of MSA, so what the **** do I know, lol.

I also hope that while the logistics of changing doctors is hard (I’m not sure if you are still driving) it’ll be good to have a new set of eyes on your case. And think of all the Iowa State clothing you can wear in Iowa City. ;)You’ll be doing God’s work.
 

1SEIACLONE

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I hope everybody is doing good as we head into better weather and more sunshine.

Update/ Venting - feel free to ignore...

Mercy One Ruan Neurology denied our referral as the symptoms, conditions, and progress are better handled by the University of Iowa's Advanced Neurology Center. Of course the logistic issues are going to be a royal pain in the ass, but the bigger stresser is the prospect of MSA.

The big concern is if the diagnosis is going to remain Parkinson's Plus or Parkinson's Plus with MSA (Multiple System Atrophy).

While Parkinson's Plus is a lifelong prison sentence in hell, MSA is a death penalty with a 6-8ish year expiration date. If it were MSA, we would probably be on the lower end of that range based on timing and progress. If not, then we have hope of continuing to manage symptoms for a longer life.

Obviously very different prognosis and anxieties between the two. Scared to death of the MSA option as I want/need to be here for the kids. They have all my mental health issues and I can uniquely connect with them to help them navigate the challenges past, present, and future. I'm terrified of not being able to do that, and thus fail at the one thing I was put on this Earth for - to be the best dad I could be.

When does Football start again?
Its difficult to be staring the ending of your life in the eye, and not knowing the future and how it not only going to affect you, but your wife and kids.

I lost my SIL last month, a week before my younger brother called, he has been feeling sick all winter long, and went up for some blood tests to figure out what was wrong. They diagnosed with terminal liver cancer, he was referred to IC, where they have started some infusions to slow down the growth of the cancer. I pushed him to go up to Mayo for a second opinion, they had it all set up and his insurance company refused to OK it, they said Mayo is out of his area, he could go to the Mercy Cancer Clinic in Des Moines or continue treatment in IC.

According to an email I received from his daughter, if he does everything they say, basically stop drinking, take all the infusions and get very lucky, they give him a year at most. The doctor, who is a local kid and went to school with my niece, told her that there was nothing anyone could do for him, the treatment he is on, is to slow down, not cure his cancer. Chemo and radiation are out of the question as he would not survive either treatment, a liver transplant is not an option as he would die on the table from lack of blood.

Treasure every minute you have with your wife and kids, take them on trips, even if its to the park, things that they can remember, when you are gone, and take plenty of photos or videos of you for them to have and remember you, when you are gone. God bless.
 

CycloneRulzzz

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With all the death my family has been faced over the past 5 years, I have really come to the conclusion that you have to live everyday to the best of your ability, and when its your time, its your time to go. Not a religious person myself, but I do think there is something on the other side, what that is, I have no clue. It is a sick joke if this is all there is and then you go into the ground, with nothing more than that. Kind of depressing really.

I remember what helped when I lost family members as a kid was when you go you will get to meet and be with all those I've lost.
 

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