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Posts (41)

Sep 18, 2018 · Do you have chronic severe pain, mostly at night? in Chronic Pain

I wanted to share my experience here as I truly believe others are suffering in very much the same way, but have yet to figure it out. It took me several years off of drugs to actually know what was happening to my body.

For the past 5 years, I have been sleeping on defective mattresses. (4!) All were new and purchased from Macy’s. To date, 3 have been inspected, deemed defective and my money refunded in full.

If my doctors had paid attention to me, they could have easily figured it out, but they chose to label my pain with various diagnoses and nearly drugged me to death. I’ve climbed mountains to figure out what was wrong with me and little by little, I am learning. Here is what happened to me;


Apr 13, 2017 · Sjogren’s Syndrome – Introduce yourself and meet others in Autoimmune Diseases

Those of you with severe symptoms, have you been treated with Levaquin?

Feb 8, 2017 · Heavy perfume in medical facilities, or anywhere, really in Lung Health

The problem is when it’s permeated the persons clothing, it can’t really be wiped off then.

For me, it is worse when I have a respitory infection. My senses become heightened and I react to everything. I believe the infection I currently have has been brewing since I last left Mayo. I needed to stay in a Minneapolis hotel that was brand new and still smelled of paint. My eyes burned the entire time there. When I came home, I tried to drink from a bottle of water in my fridge. It was a plastic Gatorade bottle and I could literally taste the chemicals in the plastic. That probably should have been my first clue. It’s a terrible thing to have to live with, especially when it’s not well understood.

Feb 7, 2017 · Heavy perfume in medical facilities, or anywhere, really in Lung Health

@peggyj4411 Oh dear Peggy, I am so sorry you are going through this. It’s so hard to get those who wear heavy scents to understand. Maybe you can find some back up articles on line and have them ready for when you meet with your social worker. They have to take you seriously. Please do not worry about offending those wearing the scents, they are polluting your fresh air and this is wrong. You would think that in 2017, people should be acutely aware of this.

Today, I hired a “task rabbit” to wash 3 loads of clothes and put fresh sheets on my bed. When she showed up, I could smell her perfume! My heart sank and I unfortunately said nothing. I guess I was pretty desperate for clean sheets. I will never hire someone again without stating no perfumes please. I’m hoping my bedding did not get too terribly tainted.

If you would like some help with talking to the social worker, you are welcome to have them call me. You can say I’m a friend who suffers from the same issue. Maybe 2 voices can be stronger than one here. In any case, please do not give up, you have the right to fresh air. Please stay strong and keep fighting for this and if you would like me to help you, let me know and I will send you my number. xo Michelle

Feb 4, 2017 · Heavy perfume in medical facilities, or anywhere, really in Lung Health

@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.

Feb 1, 2017 · Heavy perfume in medical facilities, or anywhere, really in Lung Health

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?

Jan 31, 2017 · Heavy perfume in medical facilities, or anywhere, really in Lung Health

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.

Jan 30, 2017 · Heavy perfume in medical facilities, or anywhere, really in Lung Health

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!!!