Category: Advocacy

Memorial Day 2020

Published on by kerrymckim1 Comment

As a history buff, I have always had a fascination with cemeteries.  Each stone memorializes a person or persons who had lived.

The words I type can not express my emphasis on the word “lived”.  I mean that in every essence of the word.  These people, who lived in another dimension in time, had emotions like us and may or may not have lived their life to the fullest.

I have always loved cemeteries.

Apparently so does my daughter.  I mean, her father does live in one now.

She jumps up and down with excitement when it’s time to go visit a cemetery.  I am not alarmed, she is a smart child and she has had to face things that many adults have never had to face.

But in her young life, she has also helped her grandfather place flags on Veterans graves every memorial day.

This was my daughter last year placing flags on graves with her grandfather.

And last year we got to attend the parade.

This year was different because of a certain virus.

My daughter did place flags with her grandfather.  If I heard my father correctly, they visited 9 cemeteries.

There were some family cemeteries.  This is Higgins Cemetery where we placed a flag on a grave of a Civil War Veteran.

We visited an old forgotten family cemetery in the woods.  The owner of the land was going to clear the land and found the graves.   The owner did some research and found that one of the graves belonged to a Civil War Veteran. The owner contacted the VFW and the grave was rededicated.

And we visited a grave of a Civil War Veteran that was in the woods behind a subdivision.

Today there was no parade but my father and his fellow comrades still held a few small memorials (while recording LIVE by drone on Facebook).

Because they will never forget.

My daughter did get to say the Pledge of Allegiance at two of the Memorials.  She was so excited to participate. She can tell you why we are gathering which I think is impressive for a 5 year old.   Though she had trouble staying focused during the reading of General John A. Logan’s Memorial Day Order.  Hopefully that will come with age.

How was your Memorial Day?  Were you able to participate?

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Coronavirus, Vaccines, PTSD and Sepsis…Oh My!

Published on by kerrymckimLeave a comment

Almost four years ago, my husband had a simple weight loss surgery and it lead to complications. Those complications led to sepsis which lead to septic shock. The septic shock was so bad that it lead to multi-organ system failure.

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To say my world crashed down around me would be an understatement. I felt like the ground was being taken out from under my feet.
After several weeks in a medically induced coma and a month on dialysis, his kidneys started functioning again.
Then he caught C. Difficile.
(Though you don’t really catch C Diff. C-Diff is a harmful bacteria that resides in us all the time but is kept in check by the good bacteria within our bodies. However, antibiotics can kill off the good bacteria and C Diff takes advantage of the situation and grows and then turns into an infection)
He was treated with Flagyl and Vancomycin so it shouldn’t be too surprising that he developed VRE (Vancomycin Resistant Enterococci).
And he was pretty much a constant state of pneumonia.
He couldn’t eat. All his nutrition came from an IV. It was called Total Parenteral Nutrition, or TPN. However, his body was having trouble absorbing the TPN. He always had a thick head of hair and most of it fell out.
He couldn’t talk because he had a tracheotomy. He was the one person who always would reassure me that everything would be okay and he couldn’t. Though it would have been a lie because everything clearly wasn’t okay.
He was always a man of great strength and I watch him become so weak he could barely lift his thumb.
And then came staph. And he went into septic shock again. His kidneys failed again. He had to go back on dialysis.
At this point I completely lost my faith in God because, as a Cradle Catholic, I was taught God was a loving God and there is no way a loving God could have done that to Bryon and to my daughter. Please don’t take this as a plea that I need to be saved. I’m okay and doing just fine.
In a period of 5 months I watched him cling to his life. I watched his body become resistant to antibiotics. I watched him move up the antibiotic chain until he got to the end of the line.
Yes…there actually are specific antibiotics called “End of the line antibiotics.”
For 5 months I lived off adrenaline. I don’t think I can express how helpless and desperate I felt.
Sadly this story didn’t end the way I wanted it to.
I can tell you that there is some residual PTSD. Trust me…when my daughter gets a cut, Mom puts neosporin on it right away. Also any fever over 100.4 puts me in a panic and will always include a trip to peds urgent care.
Currently the United States is on the eve of a severe new disease that we don’t know much about.
Also, on Tuesday Maine has an important vaccine vote.

I won’t get into that though my Facebook friends definitely know how I feel about the vote.
From what we know (if the numbers are correct- I’m looking at you CCP/China), 5% of the people who get the Novel Coronavirus COVID 19 will become critically ill…like, ICU ill. Of those 5%, half of them will likely die.
Now is not the time to take our healthcare system for granted. It is definitely not perfect. It will get overwhelmed. The healthcare system isn’t limitless.
Our healthcare providers are going to be busy.
Be wise with your healthcare choices. And you are your best advocate. Do whatever you can to prevent getting sick- eat right, sleep, was your hands, don’t touch your face or pick your nose. Stay home if you are sick.
As my late husband would say “Don’t be a Dick”.
Keep yourself and others from getting sick. (Yes I made the rhyme on purpose).
Sepsis, in short, is an inflammatory response where your body goes into overdrive when it’s fighting off an infection and starts to attack itself.
The reality is any infection or virus can potentially cause sepsis. A tooth infection…the flu…measles…an infected cut…step throat…pneumonia…the new Coronavirus…and many more can all potentially lead to sepsis.

I have seen people get hysterical about the Coronavirus. I have seen people mocking those who appear to be hysterical. I worry that there very few people are where they are supposed to be…vigilant and concerned.

I also worry about the people who spread lies about vaccines and that no one holds them accountable. There are many parents who are researching and trying to do what is best and anti-vaxxers prey on these people.

Make your own decisions but make sure you research the places you get your information.

You can ignore Science. You can run from Science. But Science will catch up with you eventually.
The worst case scenario can happen to you. It happened to my husband and my family. Don’t dismiss “worst case scenario” stories as scare tactics. My story actually happened and it was a nightmare. I wouldn’t wish it on my worst enemy.
I don’t usually share that part of my story. Personally, it is painful and I wish I could forget it. But I can’t.

And now that story is apart of me.
But with these two important issues going on…the only thing I ask you is to educate yourself on sepsis and the symptoms of sepsis and seek medical care if you or a loved one exhibits these symptoms.
At the very least, please look at the FAQ section from the Sepsis Alliance website but also look around the website. There is a lot of valuable information.

Sepsis Alliance FAQ

10 Do’s and Don’t for helping someone in crisis (or grief).

Published on by kerrymckim2 Comments

This blog post is a long time coming.

I have tried to write about this topic so many times but something always stopped me.

I was afraid to be honest.

I didn’t want to seem ungrateful.

Background story

But something recently changed that.

For the past couple of months, my friends mother has been very sick. There was a period of time where my friend didn’t know if her mother was going to live or die.

(Don’t worry. My friend is aware of this blog post. She will not be blind-sided.)

A few months ago, my friends mother went into septic shock.

I spent a lot of time messaging back and forth with my friend. At the time, she was concerned she was burdening me with painful memories. I would be lying if I said that events like this do not stir up painful memories. I remember how lonely I felt when Bryon was in the ICU. I wasn’t physically alone but I was emotionally alone.

I can assure you that you don’t know that kind of fear until you have lived it.

After surviving that experience, I can’t let anyone sit through that experience alone.

So I can push aside all those painful memories and the emotions attached to those memories to help those who are going through similar situations.

(By pushing aside those emotions…I don’t mean push those emotions aside literally. It is import to acknowledge those feelings. Feel them. Then set them aside.)

My friends mother was in the hospital for a couple of months. I offered to help my friend in other ways during this time but my friend said she was okay. I didn’t push. (More on that later in this post)

My friends mother was discharged from the hospital earlier this week.

My friend has messaged me and she thanked me for being there for her. I responded that I felt bad because I did not do enough for her.

My friend’s response was that she disagreed.

She said I helped her and was informative about the experience. I helped her to ask the right questions, especially at a time when her brain could barely think of anything other than not knowing if her mother was going to live or die.

I remember how overwhelmed I was when Bryon was sick. A lot of information was thrown at me.

I pondered this and it all clicked.

I had helped my friend in the way she needed to be helped.

My feeling like I hadn’t done enough to help my friend was about making myself feel better.

I think it is human nature that we try to help people in the ways we think they need to be helped, not in the way they actually need to be helped.

Since I have officially been on both sides of this issue, I feel like I can finally write about this important topic.

  1. Do remember that it’s about THEM and not YOU.

I start with this one because I think all the other items on this list stem from this.

Before you think I am being critical, I want to remind you that I am guilty of doing this.

I am not saying everyone is helping for the wrong reasons. But unless you are Mother Theresa, you are not 100% selfless. To some extent, you are offering to help because  you are trying to make yourself feel better.

I am not saying to not help people.

Your friend or family member, or coworker or neighbor or you friend of the a friend or acquaintance or maybe even a complete stranger is having a hard go and you want help fix the problem. That is a good thing. You are a good person.

Just make sure that you are helping or offering to help to actually help, not to just make yourself feel better. If you feel better in the process, that’s a double win.

I promise you, if you keep reading, this point will make sense by the end of the list.

  1. Do respect boundaries.

Some people are not comfortable asking for help or receiving help. They may not want to accept help. They might be embarrassed to accept help. Our culture encourages us to be independent and stoic. Many of us don’t know how to accept help.

They are most likely overwhelmed.

When you are in the middle of a crisis, it’s hard to think of anything besides the person who is very sick or might die. You may want to help but the truth is, almost everything is the further thing from their mind.

It’s great that you want to help, but don’t push.

Just be ready to help when they are finally ready to accept it.

  1. Do offer specific ways to help.

When someone is going through a trauma, we want to help. We may not know how to help so we have a tendency to say “Let me know if you need anything.” I am guilty of this, even in my post-trauma life. But I am going to explain why this isn’t very helpful.

When someone is going through a trauma or has just experienced a major loss, they may not know what they need. They are overwhelmed. Their life was literally just turned upside down.

When Bryon was in the ICU, I subsisted on iced coffee and those ice cream sundae cones that were sold in the hospital cafeteria. Depending on how well Bryon was doing that day indicated whether I would take the time away to shower and take care of my daily hygiene. I know it’s gross but it’s a reality. Things that are normally viewed as vital take a backseat when you are in crisis.

I knew my parents were taking care of my toddler daughter and my cat. Bryon had scheduled all our monthly payments before he got sick. But I had no clue about anything else and I had no brain power to think of anything other than “is my husband going to live or die”?

You might be wondering, what if the person has died? A widow doesn’t need to worry anymore about the outcome, right?

To give you an example of where my mind was during those early days of widowhood, I lost my phone. My parents and I spent an hour tearing apart the house. I finally found my phone…in the refrigerator. I have no idea why my phone was there.

Also, don’t put your phone in the fridge. My phone was never the same after that. It became possessed and Bryon wasn’t there to fix it for me.

My point is, if you want to help someone going through a trauma or loss, be specific.

Is their lawn overgrown? Offer to mow it.

Is something in their house in disrepair? Offer to fix it.

Want to bring them dinner? Ask them if you can bring dinner on Thursday night or if you can give them a gift card to their favorite restaurant.

Just be specific because it will be a lot easier for the person to say “yes” or “no” than come up with task.

It’s great you want to help but make it easy on the person you are trying to help.

  1. Don’t take it personally if your help isn’t needed.

When someone is going through a trauma or a loss, people offer to help.

A lot of people.

That is great but the person you want to help may be inundated with offers to help. They may already have someone mowing their lawn or bringing them meals. They are most likely grateful for your offer but they are too overwhelmed to think of something else that might need tending to.

I had people get mad at me because they offered to help and I didn’t take them up for it.

I became stressed out that I was offending people because I didn’t take them up on their offers.

You don’t want to put someone who is going through a trauma or loss to feel guilty on top of all the other emotions that come with that crisis.

Don’t take it personally. However, remember to…

  1. Do follow up.

All those people offering to help the person in crisis will eventually disappear. They will move on with their lives and lose interest.

If you are patient, you will get a chance to help.

If you truly want to help the person, follow up every couple of weeks or once a month.

Trust me, there is a good chance this person will need help in the months and even years to follow. A widow will post on Facebook that they need and not get any responses and wonder what happened to all the people at the funeral who offered to help. It happens.

  1. Do follow through

If you promised to help, show up.

I know life happens and sometimes legitimate things pop up that may prevent you from following through. And that’s okay.

But if someone is going through a crisis and you gave your word, trying your hardest to be there.

If you have to back out, try to find a replacement.

The person going through the crisis is counting on you.

When Bryon was in the ICU, I had a friend agree to baby-sit my young daughter. Around the time my friend was supposed to arrive, she texts me and asks if I still needed her to baby-sit.

What?

I affirmed that yes, I still needed her to baby-sit like she agreed to.

My friends started giving excuses. She was a manipulative person in general and she was trying to get me to say something along the lines of “That’s okay. I’ll manage.”

I didn’t. I ended the conversation along the lines of “well you got to do what you got to do.”

The same person offered to help me if I needed it in the future.

I can’t make this up.

I never asked her for a favor again.

And luckily another friend came to the rescue and baby-sat my daughter that evening. In case you were wondering.

  1. Do let go of attachments and expectations.

Here you need to be like Elsa and let it go.

Just help. Don’t worry what the person does with the gift cards or excess food or whatever. Don’t get attached to any outcome. This person is just trying to survive and doesn’t need people breathing down their neck.

An example-

When asked for suggestions on how to help new widows, I always suggest a Target gift card. Because if the widow is financially strapped, she can use it to buy laundry detergent, underwear, cat food, whatever she needs. If she’s okay financially, then she gets some retail therapy. But don’t give her a gift card and tell her how to spend it.

This example leads me to…

  1. Do respect their privacy

Just because you help someone does not mean that you they owe you an explanation on life choices.

If you help someone, it does not mean that you get to ask about their financial situation or their relationship status.

If you help someone, it does not mean that you get a say in their living arrangements or parenting choices.

As Salt N Pepa said:

It ain’t none of your business.

If someone needs your opinion, they will ask for it. End of story.

  1. Don’t keep score.

It’s not like Nike. Just don’t do it.

Let the Karma Gods worry about it. They can keep track on their Google-Doc-In-the-Sky spreadsheet.

If someone is going through a crisis and you help them, I would say that there is a 99.9% chance that this experience will change them forever. They will most likely pay it forward the best to their ability. They are not required to report back to you every time they paid it forward.

Of course, there is the 0.01% chance that the person you helped isn’t profoundly changed.  And if that’s the case, you may just need to accept that you helped an asshole and move on.

If you help someone, it doesn’t mean that you can take the relationship for granted because they “owe” you.

If you help someone and feel the need to keep score, just back away from the relationship. This is where things get toxic.  This isn’t a healthy relationship for anyone involved.

  1. Don’t throw it in their face afterwards.

If you throw the fact that you helped someone in their face, you might be an asshole.

Again. It’s not like Nike. Just don’t do it.

Because, Karma.

If you find yourself in this situation, you suggest you re-evaluate your life and how you treat people.

And if you happen to be the person who accepted help and someone who helped you threw it in your face, walk away from that relationship. It’s not a healthy dynamic.

Final thoughts

I hope this information is useful. The purpose was to help people be the most effective when helping.

I really hope this post did not come across as negative. We are all probably guilty of many of the items on this list.  Don’t feel bad.  As long as you are trying to help people, then you’re heart is in the right place and that is the most important thing.

If you have any suggestions on how to help those in crisis, feel free to drop me a comment.

If you have ever been in a position where you needed to accept help, what did you find useful?

Dear American Healthcare System- You fail.

Published on by kerrymckimLeave a comment

Dear American Healthcare System- You fail.

This isn’t about a single payer system.  Those type of systems have their own set of issues.  But while the political parties argue about the costs and accessibility, your failure runs deeper than that.  What good is a healthcare system that is cost efficient or accessible if it does not provide quality care?

You have failed so many people.

You fail those who get misdiagnosed or not diagnosed at all.  

You fail those who go to the doctor to get their symptoms checked out and those systems get brushed off.  Then those patients find out months later that they have Stage IV cancer.

You fail those who need psychiatric care, but don’t get it and end up being a danger to themselves or others.

You fail those who have progressive diseases and have to pay $20k a year on their medicine.

You fail all those patients who fall through the cracks because doctors are too busy looking at their one system of expertise instead of the patient as a whole person.

You fail every patient that has had their drugs mismanaged.

You fail to provide support to the families.  They may not be the patients, but having family members who are sick is stressful and they need support too.  There need to be crisis counselors.  

You fail those who get admitted to the hospital for a procedure and while in the hospital, the patient develops an infection.  Deadly infections such as C. Diff (costridium difficile colitis), MRSA (Methicillin-resistant staphylococcus aureus) and VRE (vancomycin-resistant enterococcus).  These infections have the potential to turn into sepsis, which can be deadly.  

Hospitals need to be held accountable for infections acquired in the hospital.  People should be able to be treated without the fear that they will develop a life threatening infection.  

This is not acceptable.

Bryon fought many infections during his stay in the ICU.  I had to learn the names of antibiotics that I never knew existed and should not have had to know existed.  

Hearing about Rep. Steve Scalise being readmitted to the ICU for infection brings out many emotions for me.  A sort of PTSD where I relive parts of the nightmare.  I can still feel the fear and helplessness I had when Bryon was fighting the infections.  For months I sat by his bedside, just waiting.  Staring at the machines that displayed his vitals and trying to will them to be stable.

I feel for Rep Scalise’s wife.  I don’t want to be arrogant and say I know exactly how she feels because everyone handles crisis differently, but I have a better idea than most as to what she is feeling.  She should not have to be dealing with this, especially after the trauma of her husband getting shot.  I just hope she gets the support she needs and that her husband gets well again.  I hope that the outcome is different than Bryon’s outcome.  

Sincerely-

One pissed off widow.

A conversation with NFL player and patient advocate Rolf Benirschke

Published on by kerrymckimLeave a comment

Earlier this week, I had the opportunity to attend an event with NFL player and patient advocate Rolf Benirschke.  This event took place at the New York State Capitol and was put on by GOBOLDLY and New York Health Works.  The event was attended by a diverse group of people including legislators, legislative staff, researchers, pharmaceutical company representatives, representatives from healthcare organizations and patient advocates.  I was excited to have the opportunity to attend this event.  I am trying to learn as much as I can about health care and patient advocacy.  I attended this event with one of my best friends, Jen.  She is the New York State and Vermont Advocacy Director for the National Multiple Sclerosis Society.

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The event opened up with NY Assemblywoman Crystal D. Peoples-Stokes (D-Buffalo).  She talked about her experience working with hospitals in Buffalo and how they collaborate with private companies who are working bringing the latest medical technology into Buffalo Hospitals. She also shared a personal experience about a friend with lung cancer who was receiving a cutting edge therapy in New York City that was developed in Buffalo at Roswell Park Cancer Institute.  

Rolf Benirschke was in his second season as a kicker for the San Diego Chargers when he was diagnosed with ulcerative colitis.  In his third season, he collapsed on a cross country flight and had to have two surgeries and spent 5 weeks in the ICU.  Like Bryon, he lost part of his intestine and went into septic shock and had organs shut down.  He came close to dying.  Rolf states that he didn’t know why his life was spared, but he was given a second chance.  He got his position back with the San Diego Chargers and played for seven more seasons.  

Rolf also stated that while he was in the ICU, he received 80 units of blood.  This was in 1979 when blood screening wasn’t as safe as it is today.  Rolf contracted Hepatitis C.   Rolf was given therapies for Hepatitis C which worked.  He expressed gratitude because he knew that he was lucky.  He brought up how Arthur Ashe contracted HIV from a blood transfusion that he received while having heart surgery.

It was inspiring to see Rolf share his story because the only way we are going to make positive changes in our healthcare system and patient care is by education.

We are living in exciting times when it comes to medicine.  My job is in oncology data and I see it.  They can test some tumors for the specific markers within that tumor and a patient can get a treatment based on their specific tumor markers.  I truly hope that diseases with a grim prognosis will be curable in our lifetimes.  

Jen and I got a chance to speak to Rolf.  We discussed barriers to patient care and we discussed part of Bryon’s story.  I encourage everyone to get out there and learn about the healthcare system.  You don’t need to work in healthcare to learn about it.  You never know when you need to apply that information for your own care or that of a loved one.

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An epiphany

Published on by kerrymckim7 Comments

There have been two feelings I have had my whole life.

The first feeling of restlessness.  I have always felt that there is a whole world out there to see.  So much history and culture to absorb.  Different people with different routines and traditions.  

I had only left New England seven times before I went to study in England the fall of my junior year in college.  Three of those times had been to Canada (New Brunswick, Quebec City and Montreal), two had been to New York (NYC and Niagara Falls with a side trip to the Canadian side) and one trip to Gettysburg, PA and one trip to Washington D.C.  The flight from Boston to London at the age of 21 was my first time flying on an airplane.  I have since seen more of the U.S. between my involvement in the Young Republican National Federation and my parents purchasing an RV.  I have seen more of the world due to Bryon and my love for cruising.  And I don’t plan on stopping.  I promised Bryon I wouldn’t stop.

Don’t get me wrong.  I do love my small Maine town.  I miss Maine, especially the people and the ocean.  But I always felt like there was more in the world and I wanted to experience it.  Maine did feel so isolated.  The only cities you could travel to easily by car was Boston and Quebec City.  I always wanted to be close to more US cities.  I love Boston (my birthplace) and Quebec City but I love having the option to do weekend trips to other cities.  

I still feel that urge to see the world.  It doesn’t matter if it is a back country road or a big city.  I just love to see new places.  I love historical sites and museums.  I love trying local food.  I love shops.  I love scenery.  I want to see it all.

The second feeling I have had my whole life is that I have always felt like an outsider. That I am on the outside looking in.  I never felt included despite being involved in sports, clubs, and later politics.

This brings me back to high school and college.  I always worried where I fit in.  I wasn’t cool but I wasn’t uncool either.  I wasn’t particularly included but I wasn’t excluded.  I had friends but I wasn’t invited to the cool parties.  Though looking back, I am sure some of that was me.  I didn’t have the wisdom to know how to be as open to friendships.  Being open to friendship is something I only started to do when Bryon got sick.  

I followed my same social patterns in college.  There were two major groups in my college dorms.  The theater/art/music majors sat on the left side of the cafeteria and the athletic and Greeks sat on the right hand side.  There was one row of tables that was right in the middle near the salad bar and an ice cream cart.  I was friends with people on both sides and would sit on either side.  If I was by myself (something that didn’t phase me, especially after studying abroad and going to Paris by myself) and I didn’t see any of my friends, I would just sit in the middle.

When it comes to my writing and purpose, I come back to these two feelings that have plagued me my whole life.  

I have so many ideas for blog posts in my head and no idea where to start. I have so many ideas of what I want to accomplish, but I don’t know how to get there.  Now I have Paul Simon’s Me and Julio Down by the Schoolyard stuck in my head.

I think about the concept of having a niche when writing.  What kind of blogger and writer am I?  Trying to find what writing niche reminds me of my high school and college years where I was trying to find the right table to sit at in the cafeteria.  My half-marathon training has been suffering due to my poor time management skills so I am definitely not a running blogger.  I don’t travel enough to be a travel blogger.  I write about life, but I am not a lifestyle blogger.  Trust me, if you could see how messy my living room is, you would know why I don’t post pictures of my house.  I write about death and grief.  It is important for me to share that part of my story as our society has a twisted view on death and grieving and we need to talk about it.  But I don’t want Bryon’s death and grief to define me.  I am still a person who has a lot of living left to do.

I need to make a difference.  I need to help people.  

I need to talk about grief to help widows, especially young widows because the world thinks of widows as being elderly.  

I need to talk about grief to help those who have lost loved ones, not just widows, but anyone who has lost a child, family member or friend.  

I need to talk about rebuilding my life to help those whose life and sense of security  was shattered, whether it was by death, divorce or job loss.  

I need to talk about my struggles in parenting to help those who are single parents.

I need to tell my story of surviving to give hope to those who are struggling to carry on.

I need to talk about the problems in our healthcare system so people can advocate for themselves and their families.

It dawned on me today that instead of worrying where I fit in, I need to just blaze my own trail.  Not just with my writing, but in my life in general.  If I truly want to be open to new people and new experiences, then I shouldn’t be focusing on trying to put place myself in a niche or group.  If I do that, then I inadvertently narrow down who I meet and my opportunities to make a difference.  I have spent my whole life waiting for others to define the path I am to take.  That is silly because no one other than myself can know my true life purpose.  No one else can understand what I hope to get out of life.  If I wait for others to define my path, then I am limiting my potential.  

I need to blaze that trail even if I don’t know where I am going.  Besides being a wife and mother, the other two times I felt accomplished in my life where when I took risks and did something scary.  The first was my semester in the UK and the second was my years in politics.  They were the two times in my life when I felt like I was out experiencing life the most and my experiences were the most rewarding.  I pushed ahead and did things out of my comfort zone.  I didn’t let fear stop me.  I need to remember this as I blaze a trail forward.

0.3

Published on by kerrymckimLeave a comment

Bryon died of medical complications.  The odds of what happened to him were 0.3%.  I will never know why he was in the 0.3%, and not the 99.7% that has an uneventful recovery.

This graphic is from the NHS.  For those who may be unfamiliar, NHS stands for National Health Service which is the healthcare system in Great Britain.  I am not surprised.  Their election graphics are phenomenal.  If you get a chance, watch the coverage of the British elections on Thursday night.  Therefore, it doesn’t surprise me that they have great graphics in healthcare as well.  I was also told when I was advocating for the Multiple Sclerosis a few weeks ago that the NHS has the best literature for MS patients.   

Before you think I am veering into a post about socialized medicine, you are wrong.  I just want to talk about this awesome graph.  I don’t know the purpose of this graph.  Is it due to the recent terror attacks and is the purpose of this to keep people from fearing terrorism?  Or maybe the purpose of this graph is to raise awareness for heart disease or cancer? I don’t know.

I am not against raising awareness for the more common diseases like heart disease and cancer.  Awareness usually makes patients aware of the disease and the warning signs and thus they are more likely to seek medical attention during the earlier stages of a disease and that produces a better outcome.  Awareness usually increases funds for research through grants and donations.  As far as I am concerned, awareness for any disease that has the potential to kill is a good thing.

But according to this chart, someone has a better chance of being murdered or dying in an “undetermined event” than dying of medical complications.  Therefore, people usually don’t think that it is a possibility.   Because people who live in first world countries do not think that these events happen.  But they do.  

After Bryon died, I kept playing the events in my head over and over again.  But then I realized that I am not a doctor.  I do not have a medical degree.  I can only speak for living in the U.S., but here there is a feeling that the healthcare we receive here is the best.  We believe that doctors will take of you.  If you have a problem, the doctors will figure this out.  But unlike cancer ribbons and wear red in February for heart disease, there is no awareness for medical complications.  How do we as a society change that?  How do we prevent medical complications from happening?

 

Advocating for MS in the State Capitol

Published on by kerrymckim1 Comment

I had an amazing opportunity this week to advocate for people living with Multiple Sclerosis.  It all started a few months back when I told one of my best friends that the company I work for gives every employee five paid days to volunteer each year.  (Something more companies should do.)  My best friend is the Advocacy Director for the National Multiple Sclerosis Society serving New York State and Vermont.  Part of her job is to give people living with MS the tools they need to be advocates.  So I told my best friend that I have 5 volunteer days that my company gives me and I may as well use them and the MS Society is definitely a cause I support.  My best friend invited me to join her team when they spent the day at the New York State Capitol advocating for several issues that affect MS patients.

I have several friends who live with MS as well as a few distant family members that had MS but I never realized how little I knew about the disease.  Some of the things I learned included:

  1. The cost of medicine is astronomical and ridiculous.  A medicine that has been on the market for 20 years that was $8,000 thr year when it came out now costs over $80,000 a year.  So if someone needs this medicine and has a 20% coinsurance payment, they have to pay over $16,000 a year for the medicine.  I don’t know how it is reasonable to expect a middle class or lower class person to be able to afford that.  One of the people advocating said that they knew a middle aged person who had to move back in with their elderly parents because they couldn’t afford to live on their own and pay for their medication.  I remember complaining when the copay for my albuterol inhaler went from $20 to $40 and this is a harsh reality check.
  2. The lack of transparency from insurance companies can make it difficult for MS patients to be able to choose treatment.  Sometimes a drug may lose its effectiveness or require some trial and error but it’s hard for a patient to make that change if they can’t get a clear answer from their insurance company as to how much the out of pocket expense is going to be.
  3. MS patients don’t get to choose if they receive their drugs through the mail or at a local pharmacy.  Their insurance company makes that decision.  Some people like to get their drugs in the mail and it works out great but for other people it doesn’t work.  Sometimes the drugs are stolen and since they are expensive, the mail order pharmacy may be hesitant to resend them (it’s not Amazon.com who will usually resend an item that doesn’t show up). An MS patient usually has to jump through hoops to get the medication they need and any gap in medication coverage can cause big problems in their treatment.

I learned so much during this day.  In addition to learning about MS, I learned about the process of meeting with legislators and discussing issues and seeing how change could happen.  I was in awe of my best friend as she would talk to the legislators or their representatives.  It was amazing to see her in action.  My fun-loving friend got down to business!  I was also in awe of the MS patients who bravely told their stories to help themselves and others afflicted by the disease. At first I felt a little self conscious because I was “just a volunteer” when everyone else was an employee or they were living with MS but everyone welcomed me to the team.  And they answered my stupid questions too without making me feel stupid.

When Bryon was in the ICU, I had to learn very quickly how to advocate for him.  It does not matter how good the hospital is, one must stay on top of what the doctors are doing and saying.  I think the struggles I had are the same struggles that others have regardless of illness.  One of the things that always seemed to concern me was that the different teams of doctors didn’t seem to communicate and I heard that was also the case with MS patients.  MS patients have to see neurologists that specialize in MS and if they see another type of doctor, it is imperative that that doctor communicate with their neurologist because what might be a standard treatment for a healthy person may cause serious complications to a MS patient.

While a patient (or their family as was my case) should always be aware of what is going on, I know it was exhausting to have to stay on top of the doctors to make sure they had the correct up-to-date information.  But I had to do it.  I have a background in healthcare since my profession is in Oncology data but I can’t imagine how much harder it must be for patients and family members who do not have a background in healthcare.  Bryon could not advocate for himself and my heart breaks for the patients who don’t have family members who work in healthcare and don’t understand healthcare jargon.  I can’t imagine how lost they must feel.

After this experience, working to make sure patients and patients families have to tools to advocate for themselves is important to me.  I don’t want anyone to feel like they were hit by a steamroller like I was.  I hope I get more opportunities in the future to advocate for patients and their families and I thank my friends at the MS Society of New York for this including me.