Heavy perfume in medical facilities, or anywhere, really
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.
Interested in more discussions like this? Go to the Lung Health Support Group.
@chicagomichelle, Oh Michelle, NEVER IN A MILLION years was it my intent to shame you! That just is NOT in my DNA. If in ANY way I hurt or offended you .. you can absolutely believe from the bottom of my heart it was never my intent. My ONLY feeling was anger at those I felt had wronged you by not "hearing" you .. and if I used the wrong words in my frustration with those I felt had done you wrong I am so sorry. You are not a long term reader of my MAC Forum .. if you had been you would know I would never intend to "shame someone on the internet" .. that is just not me. And if you feel that way .. I am so sorry .. please accept my apologies. Truth is I rarely read any posts other than from my MAC Forum .. just happened to read yours and felt so bad for you that I jumped in where I think I should not have. I was wrong .. I should not said what I did. I am so big on advocating for ourselves because I see it all the time with doctors who are NOT "do no harm"! Please forgive my bull headedness if you can find it in your heart. Katherine
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.
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!
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?
@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
And virtual hugs back to you! Thank you Rosemary, for saying such kind things about me when you are struggling with your own problems! I have tried previously to warn some aspirin-popping people who were already complaining about side effects, but to no avail. There may be a genetic link in my aspirin problems, since so many of my relatives on my mom's side of the family can't tolerate aspirin. My older sister had bad bleeding also when she was in college, with purpura and bruises too..The doc in the college infirmary told my sister to stop taking aspirin, she did, and thank God escaped the hospital. There are so many chemicals out there--we can't possibly avoid them all..Poisonous vapors, to us, come floating in with the air. As for drugs, we ususally have a choice if we are lucky. I hope you are doing well, Rosemary, and feel better now that the days are growing longer. Gee, do I dare mention those Spring allergies on the horizon? I am finding more relief from noxious vapors (overly perfumed employees) by sleeping with oxygen and using my nebulizer 3 times a day. I sure was surprised at the relief oxygen provides! Have a great week, and may you breathe slow and easy! Hugs again, Peggy
Hi Michelle! Thank you so much for the incredible letter; yes, we have to be crusaders and keep talking till we are blue in the face! Most important, you are you doing with your heart? I am very worried about you! Since I have to cut this reply short for now, yes, there were 2 doctors in the hospital, my internist and hematologist, only said it COULD have been aspirin, then decided that I had a rare virus that attacked my immune system!! I just couldn't believe it! I guess a rare virus looked better than plain aspirin on the insurance forms! Lord Have Mercy! Get well soon, Michelle!
@peggyj4411, so interesting, they are telling me I have a nurovirus, sepsis and pneumonia. When I got to the room Tuesday night, I asked them about the ventricle. They asked what I was talking about and tried to convInce me if I had that, I'd be much sicker! The next morning, I asked a doctor who only became angry at me and screamed at the nurse to print out what was in the computer so I don't think he's lying to me! Dude!! I'm not lying to you either!! I don't give a crap what's in the computer, I was present for the ultrasound and they very directly told me. By the wee hours of Thursday morning, I was becoming more and more furious, so I found the email for the hospital president and explained this all to him. By Thursday morning, THEY SENT IN A SHRINK!! He seemed to find me very credible, because I am. I did not get angry, even though I was, I just kept repeating the same story, over and over. By Thursday afternoon, the floor supervisor was in here apologizing profusely. The ER FORGOT TO INCLUDE THE ULTRASOUND REPORT!! I lay here for 48 hours knowing I had a collapsed ventricle and no one wanted to believe me, but they finally tracked down the US, so they now had no choice!! I came to a completely different hospital too, though I really wanted to go to St Marys. I just didn't think I could handle the 6 hour drive and there was no way I could fly. My heart rate was 150+. They were going to release me today and my pharmacy calls. They were about to give me an antibiotic that could potentially kill me! It has very bad side effects and the pharmacist caught that I had a reaction to it in 2005. If all of this doesn't kill me, nothing will. They did do another untrasound late in the day Thursday and the V had opened up. The ER said it was likely due to dehydration when I came in and should open back up. They didn't let me go tonight after hearing of the prior issue with the drug they were about to prescribe and they still have me on a IV antibiotic, one they tell me is "mild" yet my ankles still feel broken right now. If I use the use of my legs again, I'll lose my mind. This is truly a nightmare and I wish so bad I had rolled the dice and went to Mayo.
I go to one of the pools in Sun City West and the perfumed people scent wafts over the water like big raft. And lingers.
I would not impose my perfume in movies or on planes etc.
I was not offended when a friend could not walk near me cause of my perfume. I respected her needs.
When I told someone I was allergic to their perfume they were insulted and I was told I should not have said anything. And this was at volleyball on the beach. She still stunk. But, others thought I should just be quiet.
I can get a headache after being next to someone with the wrong perfume.
I sat next to a friend at a movie and the smell of his cats affected my EYES and headache - I had to move away - he later apologized.
What should we do, speak up of just bear it?
20 years ago, after allergy testing - I was given papers with what brands I Could buy without being allergic. Does Mayo offer this list?
I don't like being told to avoid certain ingredients - then with every cosmetic and product I buy - I'm supposed to carry around of list of chemicals I'm allergic to. And to put some in a baggie to be tested at Drs. - then go back to see if there is a reaction.
What has your experience been?
And could you recommend Allergist in either So Bay, CA or West Valley, AZ?