So I'm having a hard time today because in conversation with coworkers (who are great normally), I mentioned if I went pallative with lyme, I would likely not be covered by our employers sick plan and they smirked.
"Pallative?" they said.
"Uh yeah. Pallative."
What %dhfk£]$ part of that did they not understand?
I'm sorry but I don't care what illness anyone has. The word pallative shouldn't bring a smile to anyone's face, even if they think Lyme is a walk in the park.
It's this kind of $hi+ that wears me down, even more so than the unrelenting pain and neuro issues.
I just needed to get that out to folks that understand where I'm coming from.
Posted by lax mom (Member # 38743) on :
Does that mean like hospice?
I'm sorry you have to deal with such jerks. You have a heart of gold and don't deserve such invalidation.
Posted by Keebler (Member # 12673) on :
- I know it must be disconcerting but most people will not know what that word means.
lax mom & and others who have not yet heard this term:
"Palliative" means just support to help a patient feel better. It means not addressing the cause.
I did not know what that meant until I got very ill and a PT used it for me -- while telling me that insurance did not cover "Palliative" treatments.
For a PT to work with me, they had to prove treatments had a measurement effect on improvement -- not just Palliative. They didn't care about what helped me feel better. I (nearly) literally was supposed to be able to jump through hoops to prove it got me functionally better.
"Palliative" is used in hospice as a distinction for various soothing treatments but it's also used in other aspects for those with chronic pain, etc.
And, it's true, insurance companies usually don't like to provide Palliative care. -
[ 02-05-2014, 05:06 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Greta,
I know you are a dear heart and I don't want you to take this the wrong way (really nice voice here) . . . I don't think it's wise to talk to anyone at work about lyme . . . or your options.
Be careful - for various reasons of praticality or heart. -
Posted by GretaM (Member # 40917) on :
Yes. I guess it is a broader term than I thought.
But I still don't think it deserved a smirk.
In fact, I can't think of much right now that ever deserves a smirk.
Except maybe when technology catches up and proves Bb survives in the body beyond antibiotic treatment.
Then we can all smirk.
Oh how I yearn for that day.
Posted by Keebler (Member # 12673) on :
- They may have smirked because they did not know the word and some embarrassment crept in.
They may have smirked because, for those who are young and healthy, they just don't get it and you were light years off their thought track.
They may have smirked because they lack emotionally maturity. Or they are just rude, snide, etc.
But you can't try to second guess that. Just hold onto your dignity. they can't take that from you. -
[ 02-06-2014, 02:12 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses.
It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness — whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support.
It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. . . .
[much more detail at link] -
Posted by Lymetoo (Member # 743) on :
True that they probably had no idea what you were talking about. And I agree, don't talk about your illness with them.
They won't understand and it could backfire.
Posted by Keebler (Member # 12673) on :
- With the very rare exception, co-workers are not friends. They never will be. They just won't. You are all there to do a job -- or you'd not be there. This is business. Be cordial and genuine - but not an open book. It's not summer camp. It's a business.
They are not the people in your life who will be in your friendship circle for life. -
Posted by MADDOG (Member # 18) on :
I never have heard that word before. Sounds like food that slides past the palate real good.
Palative = easy to swallow.
The people at work were goading you about the fancy word.It had nothing to do with Lyme.
MADDOG
Posted by hiker53 (Member # 6046) on :
Wow, Greta--I am so sorry that happened. My boss knows I have Lyme and he doesn't get it, but my co-workers do. Of course, I have worked in the same place for 30 years, so a lot of them know "what I was like" pre-lyme.
Someday they or someone they love will get ill, unfortunately, and they won't smirk.
Bless you! Hiker53
Posted by steve1906 (Member # 16206) on :
GretaM, GretaM, GretaM....You know better than to discuss this with Co-workers, shame on U.
Well, know it's done, so you need to go forward, stop thinking about it, they’re not worth it.
You need to smile, so hear you go my friend>
The middle finger is for your Co-workers!!!! . . .
Forget about it, have a good night!!!
Steve
Posted by GretaM (Member # 40917) on :
Yes, you are right everyone.
I went too far by discussing it with them.
I was discussing the disability clause in our contract and found a loophole ammendement that is new. The only example I could think of was using my lyme example. I didn't want to use cancer example as one of the fellows just recovered from bad cancer.
So I put my neck on the block instead.
Which in retrospect is not a wise idea. Especially cause most folks think lyme is a walk in the park.
it IS in the park, when you walk in the park...
I've shared that I have lyme with them, as I have a visible IV in me at work, and also they cover my weekend shifts so I can rest.
But I should have left it at that, not went into the details of the politics.
Oops...and I pinned up pictures of the pacific tick and how to safely remove it and different types of bugs sprays to use and how often to apply them.
I see now I have done this to myself...
Perhaps the smirks was because they wanted one day without mention of Lyme. Hmmmm....
OK. I start tomorrow. OMG.
Posted by randibear (Member # 11290) on :
Oh greta, honey, major boo-boo. Never ever discuss your medical issues at work.
It only gives them ammo to turn on you later. And believe me they will. They'll start blaming you for their mistakes, misunderstanding s, you name it.
Take it from me and I was the lead and office specialist. They were the main reason I retired.
I used to have an extensive vocabulary. Wrote abd published a newsletter with a circulation of over 6500 employees.
Now I can barely put a sentence together. I knew what you meant hon.
Sometimes my brain still functions a little.
Posted by lpkayak (Member # 5230) on :
Well i too agree its best not to talk about it at work but it seems to me they are major jerks to smirk or do anything except support you...you work with iv and they question your illness?
Hiker...i guess since youve been there 30 yrs your safe-you must be close to retirement-but as a teacher i learned not to say too much
Now a days it is all about how much an employer can get out of you and how little they can give you...so its really best to keep quiet
Posted by canadianmama (Member # 36298) on :
I don't know if that is what you meant, but I thought palliative care was end of life care.
I think that most hospitals here in B.C. call their end stage care that. I know my 93 year old granny was on the "palliative" ward.
I think most people here would relate that word to someone very ill or old.
So in my opinion you are totally right to be miffed that someone smirked at you!
I think people just really don't get lyme. It's not in the news much, there are no sad telethons with sob stories, and even people's closest friends and family are often subject to doubt fostered by the main stream medical world.
Hope you are having a reasonable day! If you were thinking about palliative in the way I understood it (thanks for the info Keebler) please STOP! See yourself healthy and happy in the future.
HUGS!
Posted by Keebler (Member # 12673) on :
- Greta,
You should talk to your ER director. As you were talking to coworkers about your policy / contract or whatever, you can bet word will get back to HR. It's important that you talk to them so that they get the real words, your thoughts, questions.
I know you may not want to but now that the word is "on the street" it's best if you head off rumors and misquotes. Just go in and say you had a question or two.
Excellent point that if they thought anything at all, it might have been "end of life" connotation.
We all need palliative care, now. It's true that it's usually spoken of with cancer, end of life, all they can do is make someone as comfortable as possible.
However, it is really any care that helps the patient FEEL BETTER that may not be directly treating infection / cancer / cause.
The problem is that palliative care (massage, etc.) is so much better than just drugs to knock out the pain but kill the liver doing so.
And palliative care like massage can help in so many ways that are documented but often in more subtle measures (like, gasp, taking the patient's word for how much it helps) that the insurance companies wouldn't understand or care.
If we all had better palliative AND direct care at each step, this would not be such a miserable journey.
From link above: "It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. . . ." -
Posted by steve1906 (Member # 16206) on :
Just to clarify>
Pallative Care in the Home What is Palliative Care? Palliative Care is specialized home care for people with serious, chronic or advanced illnesses. Palliative care focuses on relieving symptoms, reducing pain and stress to improve the quality of life for patients and their families. It is provided by a team of health care professionals: Nurses, Therapists, Social Workers and Home Health Aides.
Pallative Care Can Help By Addressing: •Confusion about treatment plans •Inability to move around freely •Loss of appetite and/or nausea •Depression •Worry about the future, family or friends
Palliative Care is Not Hospice
Palliative Care is available to ALL patients and their families and is provided at any stage of serious illness. Palliative Care can also be provided while a patient is receiving curative treatment.
Nurses and physical therapists also provide home health care services after surgery while recovering at home.
Recommend home companion help, homemaker services, and physical therapy services available in the comfort of your CT home.
Palliative Care Services: •Improve the quality of life for patients and their families.
•Promote physical and psychological well being.
•Promote physical activity.
•Ensure patients are receiving the proper medications to control their symptoms.
•Help patients avoid severe and sudden effects of their illness.
•Reduce trips to the hospital.
•Lower stress level for patients and their families.
•Help patients stay at home longer.
Steve
Posted by Keebler (Member # 12673) on :
- That all sounds great on paper but I've never had insurance that covers any of that.
Greta, I woke up this morning thinking that it may be best to just drop this with your coworkers. At first, I thought you should go up for a "rematch" in some kind of classy way but, really, that may not work.
Just carry on with dignity. I do think your HR director needs to hear from you what you were discussing with your coworkers about your insurance as it could get back to them that you were complaining about coverage.
Not sure how to be proactive with that and say just the right words. But it's best if they hear from you rather than from gossip about you. -
Posted by randibear (Member # 11290) on :
Go to your manager first tho. Believe me. You dont want your manager getting a call from hr saying "hey we had one of your employees here blah blah".
Dont bypass. Bad idea...
Posted by steve1906 (Member # 16206) on :
I think it may be best to just leave it along, they already know she has Lyme Disease. GretaM, you know best, do what you think is right.
I would remove all Lyme info from the work place, you know they don't get....until they get it!
quote:Oops...and I pinned up pictures of the pacific tick and how to safely remove it and different types of bugs sprays to use and how often to apply them.
Steve
Posted by randibear (Member # 11290) on :
Good idea. Jus drop it.
Posted by Keebler (Member # 12673) on :
- My thought with going to the HR director is that you said you were talking with others about the insurance coverage not covering palliative care.
I was concerned that word will get back that you were complaining about their coverage for you. That's the only reason for my comment in that regard. If you just casually asked a question to clarify something -- that could then let the HR person set any possible rumor straight - straight from your mouth.
As for the picture of the tick, yeah, that is a good point. Everytime someone sees that picture, they might think of you. I never have good thoughts for good feeling when I see a photograph of a tick.
On any books about lyme that have tick on the cover, I block that out with a nice picture. I didn't want that icky feeling each time I picked up that book.
If you can handle fresh flowers (and so can all you are in your workspace), this might be a nice time to keep a fresh flower on your desk (but nothing pink or girly for work) . . .
or some nature photo that would appeal to everyone (add some humor with a cute animal and you'll get some smiles). I know this sounds odd but the power of connection can be both understated and powerful.
We can never know exactly why others react to us. And they may not be reacting to us at all, it's just bad timing. Stay strong in character - with a little flexibility - and the winds can just blow as they will around you as you maintain your footing. -
[ 02-06-2014, 05:09 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Trying to think of movie characters' traits to take on . . . at least offer some diversion.
When in a sticky situation, it can help to visualize how you want to comport yourself . . . and some movie scenes or actors can speed up that process.
Have fun with different actors in how they might portray a situation. From "You talking to ME?!" (Robert De Niro in an iconic scene from the 1976 film Taxi Driver) to something from Meryl Streep.
You could start talking like Greta Garbo for fun, too. I guarantee people would treat you differently ;-) -
Posted by randibear (Member # 11290) on :
Tomorrow is the most important thing. Comes to us at midnight very clean. It's perfect when it arrives and it puts itself in our hands. It hopes we've learned something from yesterday.
John wayne.
I had that quote behind me on the wall. Never failed to get comments.
Posted by hiker53 (Member # 6046) on :
I think I am blessed to have good co-workers and good students. I could not hide my illness, because of my small seizures and I used to use my walking stick all of the time. However, I don't talk about it too much.
I educated my students about Lyme. One of my crazy "pain in the rear" type kids told me a few years ago he stopped noticing my walking stick, because it was not who I was. What a nice thought.
I have 5 more years before I retire, so I think I will okay at my workplace. I have also been blessed that brain fog was never an issue for me.
So, Greta--if your co-workers are jerks, just let them be.
Hiker53
Posted by map1131 (Member # 2022) on :
I used to love to kill a jerk with kindness. I would intentionally be the nicest and most supportive person I could to them.
That made me feel good and usually made them fell like a real jerk? The real jerks continued to bash me behind my back to others.
So the real jerks became jerks to everyone that observed the behavior. I win, Jerk!!!!!
Pam
Posted by dal123 (Member # 6313) on :
KEEP QUIET in the workplace, as much you would like to proclaim recovery, shut up! Too many misconceptions!! But you can always say you know someone w etc. etc.
Posted by GretaM (Member # 40917) on :
All great advice.
Well I am a big soccer fan, and this is the year of the World Cup, so I am going to replace the tick removal and ID sheets with a picture of my favorite soccer player
And put up some funny dog cartoons at my desk.
You are right, I'll just slowly infuse in their minds international soccer and canines instead.
And if any of them happen to approach me quietly, on the side, in private, with questions regarding tick bite prevention, that is when I will talk about bug spray.
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