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!!!

@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

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.

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.