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chicagomichelle
@chicagomichelle

Posts: 41
Joined: Dec 15, 2016

Heavy perfume in medical facilities, or anywhere, really

Posted by @chicagomichelle, Thu, Jan 19 11:03am

How do we get through to people that this could actually cause great respiratory distress? Even death.

I told a hotel guest the other day, in the kindest way possible, that I was allergic to her and she needed to understand what her chemical scent could do to those with respitory issues. She was headed to Mayo. I imagined the poor patients with even more severe conditions. It was the first time I ever said that to anyone’s face, but felt it needed to be said.

I’ve experienced this a great deal this week, even with clinic staff. To date, I’ve had 0 complaints about MC, but I hope they are listening now and will work to make their buildings perfume free.

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peggyj4411
@peggyj4411

Posts: 28
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Posted by @peggyj4411, Thu, Jan 26 5:47pm

I am living in a nursing home due to many chronic ailments, including COPD and congestive heart failure. Almost every person who works here, men included, come to work drenched in the latest scents. And when they have to handle you in some way, the scent rubs off on you. i also have many allergies and breathing in all these chemicals is disastrous. There are people much worse off than me who are subjected to these perfumes. There is no way to even cut down on your exposure. Any ideas on how to very politely ask these nurses, aides, doctors, etc. to please use less of their scents?

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ladycat
@ladycat

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Posted by @ladycat, Thu, Jan 26 8:25pm

Just ask. These folks need to be aware just how potent these fragrances are. They belong to the “off-duty hours”. I worked for Assisted Care here in Sarasota, Fl
This simply was not permitted for common sense, obvious reasons.

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peggyj4411
@peggyj4411

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Posted by @peggyj4411, Fri, Jan 27 7:09pm

This afternoon I went to the nursing supervisor about the over–perfumed employees in this place. And she told me to talk to my Social Worker next week! I know we have to keep plugging away on the chemical scent problem wherever we live, even in public. It can be embarrassing when you are at work and your co–workers are saturated with different scents from head to foot. It’s great that Assisted Care bans such odors on our behalf! Let’s hope there are many other places that ban the stuff. And how about those perfume strips in all the fashion magazines? Pure torture in a small waiting room!

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ladycat
@ladycat

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Posted by @ladycat, Fri, Jan 27 7:45pm

When the fragrance arrives 5 minutes before the employee, utmost diplomacy and tact is called for. Possibly a small peace offering such as a pretty silk flower in an inexpensive vase or fresh donuts or bagels in the morning would open the door to a productive conversation on this touchy subject.

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peggyj4411
@peggyj4411

Posts: 28
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Posted by @peggyj4411, Thu, Jan 26 5:51pm

these strong odors. Is there any polite way to suggest to nurses, aides, doctors, housekeeping people that wearing such heavy scents is actually making me sicker?


chicagomichelle
@chicagomichelle

Posts: 41
Joined: Dec 15, 2016
Posted by @chicagomichelle, Thu, Jan 26 6:27pm

I’m so sorry you are subjected to this @peggyj4411. Do you have a family member who could speak to the homes management? I think it’s important to be very direct, though I understand it often falls on deaf ears. Multiple Chemical Sensitivy is huge and doctors don’t seem to want to recognize it.

Unbeknownst to me, I lived in a mold environment for 3 years. As a result, I am extremely sensitive to most drugs and I have severe side effects, which border on paralysis. The last RA drug I was on made me so weak and created a great deal of pain, in only one months time. My pain became more severe than when I was not taking anything at all, which is now the case. My inflammation has been severely curbed, yet my doctor does not seem to want to recognize this. I asked them to repeat a blood panel to see the difference in my numbers sans drugs, but I’m told there is “no indication” to do this.

I will continue to ask and talk to the department head, if necessary. The fact that my doctor is now offering 3 more biologic drugs tells me she does not understand the side effects I have dealt with. My body is literally crumbling, from head to toe, and the fact that they refuse to recognize my severe drug intolerance is very frustrating. Still, I will continue to ask and won’t give up until they listen and help me find answers. I could have been given more biologic drugs in Chicago, I didn’t have to go to MC to get them.

I know it is hard, but we must advocate for ourselves. Eventually, someone has to listen. Giving up just isn’t an option.

I hope you can get some help for this very real issue.


Jamie Olson, Connect Moderator
@jamienolson

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Joined: Apr 21, 2016
Posted by @jamienolson, Sun, Jan 29 2:06pm

@chicagomichelle, @peggyj4411 and @ladycat, Hello and Thank you for starting this important discussion on a topic that we could all benefit from addressing and discussing.

After I was personally addressed at work by another coworker who was offended (and also has respiratory issues) by a scent that I love to wear. I read our work policy and put some thought into how to address this issue. You see, I use an essential oil that helps me focus (something that I struggle with daily) and believe has benefit to me throughout my work day. After talking with supervision I came to the realization of what kind of burden this was posing on others people as well. I had no idea how it was effecting others in our work group. I was able to do some research and found alternative ways to address my focus issues without any smells…which makes for a happy work group! 🙂

Looking into our dress and decorum work policy, I found it reads as is- “It is unacceptable for employees to smell of cigarette smoke or other strong perfumes or odors while at work. Employees who arrive in the work area with the smell of cigarette smoke or other strong smells on their clothing will be required to change before entering the work area”. This is something that is given to all employees when they start here.

In our Allergy and Pulmonary areas there is verbiage on the patients itinerary that kindly asks for patients and attending family members to please avoid perfume and smells in these areas, which is great.

I also looked into our patient education center thinking this would be a good place to have educational material on those that suffer from respiratory issues and what happens when those patients come into contact with strong perfume smells. I found nothing. I then looked for a courtesy sign or something that states information for patient awareness to no avail. The positive spin…. these are all areas with room for improvement! Thank you for helping Mayo Clinic become an even better place for others.

Do any of you have ideas or thoughts for others reading this post on how to politely approach someone that may have an offensive or threatening perfume on? @chicagomichelle, what was the response you received from the hotel guest?


chicagomichelle
@chicagomichelle

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Posted by @chicagomichelle, Mon, Jan 30 5:06pm

Thank you so much for doing that @jamienolson. It is something incredibally important and I am grateful to know Mayo will be working to address this. To limit this policy to 2 areas makes no sense as these patients still need to maneuver the rest of the facility. If I’m on an elevator and someone heavily scented gets on, I try my best to get off.

I am very reactive right now and learned about a week ago that I am now allergic to aspirin!! I have stopped all drugs but had a throbbing headache for a few days. I finally broke down and decided to try 2 regular aspirin. Within 15 minute or so, I was pretty much gasping for air, trying to breathe. It was 2 in the morning and my choices were to either go to an ER or give myself a Nebulizer treatment at home. I chose the Nebulizer at home and needed to do it twice. Since then, I am still trying to regain my breath and am uber sensitive to things I was not reactive to before, like ice packs in my freezer. It’s not just perfume, its chemicals as well. My system is so worn down from the over prescribing of pharmaceuticals that I simply have no immunity left.

My doctor was not really hearing me but I finally said the above to her very directly. I told her about the aspirin and let her know the severe reaction I had. Also, she had suggested yet ANOTHER biologic drug, which could literally kill me. The last drug I was on for only a month (Arava) caused me to lose about 50% of the use of my hands. It is no exaggeration to state another drug could kill me and I am hopeful she got the message loud and clear.

She has sort of been ignoring me when I have shared what I have been through. I told her that as a Dr prescribing these very dangerous drugs, it’s incredibally important for her to not only listen, but notate. She actually did not record the issue with my hands, even though she saw me before the drug and after, clearly seeing my fingers have dropped off on both hands. I of course pointed it out to her as well but she didn’t feel it important to note. I told her it’s not only important to me, but for research as well and others who come after me. I’m still barely able to eat after the Arava as it is a drug that remains in your system a long time and even though it’s been over a month, I still experience its side effects.

As for the person I spoke to, they were not happy and acted as if I had a problem. Before I had spoken, I was sitting in my wheelchair at the front desk, awaiting someone to push me over. When they walked up, I immediately backed up. They then moved to the other side of the desk and close to me again, and I moved yet again. I could see they were aware of my movement and thought it a good opportunity to speak up, but they didn’t take it well. The bellman would get their elevator to go down to the subway and even though they had left, their scent lingered. Had that been today, I’d be gagging and for me, there’s no such thing as a rescue inhaler. The Nebulizer treatments caused my lungs to feel on fire and they have still not calmed completely down. It’s so very important to address and I am soooo happy Mayo is listening!!!

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Katherine, Volunteer Mentor
@katemn

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Posted by @katemn, Tue, Jan 31 2:14pm

@chicagomichelle, so sorry this is happening to you. Mayo Clinic mails out various information prior to everyone’s appointment. There is ABSOLUTLELY NO REASON it cannot become a standard policy .. JUST LIKE the “No Smoking” .. ‘Our Establishment Has a No Guns Policy has become that Mayo puts on the Front Page of their document “Due to patient Allergic Reactions and Sensitivies Mayo Clinic request that you arrive perfume and scent free” .. or a some statement of that kind.

All it takes is a policy decision!

@chicagomichelle, YOU must remember that YOU are your own best advocate .. NO ONE cares about your body the way you MUST. Don’t take this lying down .. advocate for yourself! FIRST of all .. if I was sitting in your shoes ..I’d FIRE that lousy doctor who treats you like that .. doesn’t listen .. doesn’t even bother to put into records your symptoms! @chicagomichelle, why in he heck are you putting up with this? Girl .. get a back bone .. stand up for yourself! That doctor is YOUR employee .. YOU are the employer!

My daughter just found out at age 50 she has become allergic to the point of needing Epipens to survive an attack. She has just undergone allergy testing at Mayo Clinic .. we find out the results later in the week. You might check into allergy testing like she has?

Hope you don’t mind my straight talk .. but it bugs me when I hear of people being treated like this. A hug to you in this tough time! Katherine

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chicagomichelle
@chicagomichelle

Posts: 41
Joined: Dec 15, 2016
Posted by @chicagomichelle, Tue, Jan 31 4:37pm

Before you decide to shame someone on the internet, you should really know their story. You may want to see my twitter account under Michelle DiGiacomo and fill yourself in.

I’m currently in the ER with a collapsed heart ventricle, but thanks for your thoughts.


peggyj4411
@peggyj4411

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Joined: Jan 09, 2017
Posted by @peggyj4411, Wed, Feb 1 7:35pm

I have long wanted to point out the dangers of very common over-the-counter drugs, like aspirin. A few years back I had a near–fatal allergic reaction to a normal dose of aspirin. I very quickly developed severe bone marrow failure and anemia. I didn’t realize I was bleeding internally until I vomited up blood and my mouth began bleeding. I had huge black and purple bruises all over my body and could not stop the bleeding from a tiny cut. When the ambulance took me to the ER the docs just assumed acute leukemia till a bone marrow biopsy confirmed my bone marrow stopped manufacturing blood and platelets and everything else connected with my blood. They never did tell me my exact platelet count except it was “Less than 1000.” I was always highly allergic to a zillion drugs, even the homeopathic stuff. There was no way to predict this reaction to aspirin. I had 20 transfusions and huge doses of steroids. The steroids blew my mind, so the docs added more drugs! I spent 5 weeks in the hospital and I did almost die from a simple but lethal drug available to anyone, anytime.

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peggyj4411
@peggyj4411

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Joined: Jan 09, 2017
Posted by @peggyj4411, Wed, Feb 1 7:43pm

Hi Michelle! I am so sorry I am replying so late, but I’ve been sick with breathing problems. I was horrified to read you were in the ER with a collapsed ventricle, how did that ever happen? I pray that the docs can fix this scary problem and get you back on track! I have to sign off in a few seconds, duty calls in the form of a nebulizer treatment and then oxygen. I posted to the media about reaction but didn’t have time to write about how the aspirin reaction runs in my family. Take care, Michelle. I have you in my prayers!


chicagomichelle
@chicagomichelle

Posts: 41
Joined: Dec 15, 2016
Posted by @chicagomichelle, Wed, Feb 1 8:02pm

Thanks for posting @peggyj4411 I hope more people will as well. So many people are called crazy when it comes to drug and other sensitivities. It’s a sin and a huge insult to those of us who suffer. I will be very proud when Mayo becomes scent free as I believe this to be a huge step in the right direction. They can teach others by example and what a huge service to us that will be. We just need to keep talking because what hurts us most is silence. I suffered for many years in silence and although very painful to write, my last newsletter was an important tool for me. My charity is incredibally personal to me and I have shared my life with my donors for many years. It was time for me to share it all and I was grateful to get the bricks off of my chest. No one should carry bricks on top of so much pain. I’m sorry that happened to you Peggy. Question, did doctors acknowledge aspirin as being the cause?


chicagomichelle
@chicagomichelle

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Posted by @chicagomichelle, Wed, Feb 1 8:08pm

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Rosemary, Volunteer Mentor
@rosemarya

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Joined: Aug 30, 2011
Posted by @rosemarya, Thu, Feb 2 7:22am

@peggyj4411, Thank you for pointing out that over-the-counter medications can result in serious complications. And in your case, nearly fatal. Too often, it is assumed that these over counter meds are safe for everyone.
I want to send a special thank you for taking the time during your own treatment for sharing your own experience with our Connect readers. You are a most generous and caring person to do this.
I’m sending you a virtual hug as you continue on your own health journey.
Rosemary

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