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My best friend died

Discussion in 'Death' started by KwanYingirl, Feb 25, 2018.

  1. KwanYingirl

    KwanYingirl I'm a VIP

    i hope this is the appropriate category for this thread. As many of you know that in addition to having PTSD, I also have chemical sensitivity that was caused by the overexposure to darkroom chemicals, most notably gluteraldehyde and hydroquinone. I abruptly lost my career 18 years ago along with loss of red blood cells, vocal chord dysfunction, brain damage, loss of peripheral sight, loss of balance, loss of an occupational identity, loss of my friends and family, loss of hope in a future. There are very few places I can go that don’t trigger a brain fog, difficulty breathing, vomiting and act like I’m intoxicated (which literally, I am).

    This chemical, the gluteraldehyde is used ubiquitous in medical centers. In the 90s X-ray techs, endoscopy nurses and doctors, workers in ORs, respiratory therapists and lab techs were falling victim to this chemical and losing their careers and for most they could never work again,

    I found a support group online that is based in New Zealand for victims of this chemical. We support each other, lobby to have the chemical banned (won that fight worldwide), lobby to have MCS recognized by Social Security as a disability (won that fight). Like this site, our members are worldwide. I could walk around the earth and find an injured medical colleague in every town. No where is safe. Fumes from automobiles, scented EVERYTHING, perfumes in EVERYTHING, tobacco pollution to name a few. Building materials that have formaldehyde made many victims homeless. In the US we succeeded in getting the NIH to start research into the mechanism of sensitivity.

    Our friends in socialized countries have it better. They don’t have to beg for acceptance. Those countries shut down the use of the chemical and have sued suppliers of the chemical on behalf of their citizens.

    There are overlapping similarities where a chemical exposure will involk symptoms similar to PTSD.

    I met a woman from California (I’m in Maine) on the support group who really clicked with me. Opposite coasts but kindred spirits. For 18 years we have supported and advised each other. Neither of our families accept what happens to us. They wear perfume to family gatherings, burn scented candles or plug in air fresheners, wash their clothes in the smelliest detergent and dryer sheets. I have two sisters that are chain smokers. Several years ago they went to Florida to visit my Mom but I wasn’t invited because they wanted to smoke and they didn’t want me there. One Xmas time I suggested all the girls in the family go to Boston to see the Rockettes. My sister ordered the tickets and handed me mine. Everyone sat together except me. My sister ordered my seat in the farthest balcony on the opposite side as they were. Same sister had a family cookout. After 10 minutes of sitting outside I was so sick I had to go to the hospital. She had bombed her yard to kill mosquitos and never told me. It took 2 days before I could be safe to drive. That’s just as bad as my dear friend.

    She lived in San Francisco and fresh air was hard to find. Her family never invited her to weddings or get togethers. She worked the politics and was part of a commitie asking Cal-OSHA to ban gluteraldehyde. They won. Years went by. Scrapping by financially,emotionally, trying to find new friends, trying to have purpose. What you feel like with PTSD is new normal for us.

    My friend was found on the floor in her house. She’d been there for two days. An autopsy will be done because her death was not witnessed. She was super nervous about open heart surgery that was scheduled for next week. She was frantic to have to be in a high chemical environment.

    She was the kindest, funny, devoted friend She loved the ocean and swimming in the bay or at the Russian River. She found purpose by being a Nanny for families that had twins and if they agreed not to use fragranced products. She loved those babies with all her heart. She was funny and swore like a truck driver. She touched every person who was in her life. An incredible woman with light and love and courage. But she had very dark days. So dark I was afraid she’d take her life. She was terrified of the surgery and she has ample drugs for pain. A part of me has feelings that death is the only cure for MCS.

    Today I am full of grief, sadness, and anger. Through my tears, I want to know what her autopsy shows. And this summer I will make a garden in her honor of succulents. She loved them. The suicide rate for people with MCS is high. After a chemical exposure, you feel so poisoned and hopeless because there are no cure for it. RIP my dear friend. I love you.
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  3. Tornadic Thoughts

    Tornadic Thoughts I'm a VIP

    From one highly scent-sitive heart and olfactory system to another, I send you many hugs and feel your and your friend's pain. It's such a difficult and frustrating thing to live with as so many others remain convinced we're crazy/too picky/just being difficult/etc., as they remain convinced all of that shit equates "good hygiene" and a "clean" smelling living space, meanwhile, it's slowly but surely breaking their bodies down along with any other living thing exposed to it (I really feel for the children and pets exposed who can't speak up). Hopefully one day it'll become common sense, but I won't hold my breath....although I must while venturing out.
  4. Freida

    Freida Been There, Done That, Lived to Tell the Story Premium Member

    I am so sorry you lost your friend --- that is so very sad....
    Supervixn, Anarchy, ladee and 2 others like this.
  5. KwanYingirl

    KwanYingirl I'm a VIP

    @Tornadic Thoughts when did you become sensitized? Did you have an exposure to VOCs? There’s a doctor at National Jewish Hospital in Denver that researches chemical sensitivity. He wrote one paper that claimed that 85% of the cases he evaluated were victims of child sexual abuse. And considering many of us planned to take our secrets to our grave, that figure may be higher. But in reality, when I flat out ask People if they were molested as children, I’m usually met with a pause and then a feeling that yes they remember some icky things. I’ve never read that claim in any other paper I’ve read..
  6. Muttly

    Muttly I'm a VIP Premium Member Donated

    I am very sorry for your loss. I hope you can be gentle with yourself.
    Anarchy, Fadeaway and KwanYingirl like this.
  7. Muttly

    Muttly I'm a VIP Premium Member Donated

    I am very sorry for your loss. I hope you can be gentle with yourself.
    Fadeaway and KwanYingirl like this.
  8. She Cat

    She Cat Policy Enforcement Banned Premium Member Sponsor $100+

    I’m sorry for your loss, and I hope that once you can come to terms with her death and passing that you can continue the work that she fought so hard for. Keep her legacy going for her...

    I once had a nurse practitioner that couldn’t be around any scent at all either. She also had lupus, but the scents would make her breathing difficult, she’d break out in a rash, and if someone wore perfume or scents she wouldn’t see them, I imagine that living like this is tough, because we’ve become a society of scents. From candles to laundry, to perfumes, deodorants, and everything in between... Everything has scents now...
  9. Fadeaway

    Fadeaway I'm a VIP Donated

    Your poor friend, may she be at peace. Be gentle with your self in this time of grieving. You honor her by sharing her story with us. She sounds like an amazing person.

    I don't have a sensitivity, but I hate the smell of chemical fragrances. Being sleep deprived, hypervigilant with hormonal stuff going on, I have been extra sensitive to the smells lately coming from my neighbors apartments. I use home made household cleaners, vinegar and hydrogen peroxide for cleaning. A few months back I was in walmart and they had a video display for glade air fresheners. It was this video screen, and as I walked by, the thing PUFFED some kind of fragrance AT ME! The smell was a trigger smell and so strong it made me sick, and it lingered in my clothes and hair.

    So if you ever go to walmart, stay away form those video advertisement things.
  10. Xena

    Xena Well-Known Member

    Hi @KwanYingirl... I'm so sorry your friend passed on... From what you wrote she is and was a truly courageous woman with a big heart.... I hope you remember all the good times...... Grief is very hard... And takes time.... Big hugs... Xx
    Anarchy, KwanYingirl and Fadeaway like this.
  11. Tornadic Thoughts

    Tornadic Thoughts I'm a VIP

    I didn't notice any sensitivities to scents of any kind (minus that nasty Axe cologne stuff a lot of my students and my step-son used to wear) until I quit smoking 11 years ago, amazingly enough, @KwanYingirl . I used to work at a few gas stations back in the day. A go-cart track place. An auto parts place. Then, part of my job for over 13 years was to inspect dorm rooms each day...and talk about a buffet of fragrances and cleaners....holy shit.

    I also used to, for decades, burn yankee candles all day every day, use the wax tarts, the plug-ins, the car fresheners, febreeze, lysol in the restroom, artificially fragranced everything hygiene related, downy fabric softener, tide scented laundry products, scented garbage bags, body sprays from bath and body works, would get perms/body waves each year, color/highlight my hair regularly, used those expensive hair products to get my styles "just right", sprayed enough hair spray back in the "big hair" days to wipe out the ozone layer(s) single-handedly, used make-up every single time I ventured out, had my mani/pedis done on a regular basis to "treat" myself, and thought all of that meant I was taking damn good care of myself in being socially acceptable and such. If only I could get all that money back and all that life back that I was steadily drowning out, be it my own and that of the environment and other living things it was tested on to get to me.

    My father used to own a clock shop that he ran out of our home for years and used a highly toxic cleaner for the movements that would stink up the whole house on occasion, even though he'd ventilate the area. I now wonder if that somehow messed with me, too. He was always sensitive to smells, but not as bad as I am. However, he died of a brain tumor the size of a softball when he was only 6 years older than I am now, so that always nags at me too, especially when I get a headache or bump on my scalp of any kind. But I had my brain checked out several years ago and they found nothing tumor related at that time. I'm also claustrophobic and that MRI machine was a royal bitch to get through.

    Once I quit cigs, overnight, cold turkey, my sense of smell and taste increased BIG TIME! The taste thing was both a blessing and a curse, as I packed on more pounds. The smell thing has mostly been way much more of a curse unless I'm in the forest or the garden, except for when I smelled a gas leak and when I smelled the hot water heater in the basement getting much hotter than normal at our former residence.

    About 7 years after giving up the cigs is when I had a gall bladder attack and ER visit that prompted me to drastically change ALL of my consumption habits all across the board to try to keep my organ(s). I had already changed to only local meat, dairy, eggs, and such, but still suffered a lot. Everything I ingest, use on or around my body, and whatever I breathe in could no longer be artificial/highly processed...as much as humanly possible. I make all of my own meals/hygiene/cleaning/pampering products from only ingredients I can safely, healthily, and comfortably have in my space.....and it's a lot of damn work....as if there's much of a choice.

    I eliminated all meat, dairy, eggs, caffeine, gluten, and alcohol...as much as humanly possible the day after being released from the ER. Then I began lots of research about each and every ingredient/product I had been consuming and marinating in and, holy shit, I can't help but feel those combinations of ingredients/energies for all those years are likely the main contributors to making me so sensitive now that I've eliminated them. Learning about the endocrine system and how severely those things affect it was a real eye opener. But not many, if any, docs wished to discuss it and just chalked it up to other things they could prescribe meds for. I don't know if I'll ever figure it out to a specific cause....all I know is there's no place like home....as long as no one visits who uses that stuff.

    Once my body stopped being fed and being marinated in all the things I used to be convinced I had to have/and was safe for me to consume, I noticed my sense of smell just kept getting more and more sensitive. Homey can't hang with any synthetic/artificial scents now....at all. All of my family (except the hubby, and luckily he never used the colognes and such) still uses it, most friends use it, most places of business have some form or another of cleaning/freshening stank lingering around, there's no avoiding it in grocery stores, waiting rooms of doctor's offices, support group settings, restaurants (although my diet choices greatly limit those options to begin with), and even a walk outside can be toxic if it's laundry day in the hood, or if it's a heavy solar radiation management spray day above, as I can smell and taste the metallic residues those days, and it's like no other taste/smell I encounter on clear days.

    There's absolutely no escaping it and it exhausts me when I try to navigate the masses and I feel I have to be cautious of who I mention it to. I have a handful of places I can comfortably visit, but I'm not a frequent flyer anywhere as it's always a crap shoot. I've been diagnosed with fibromyalgia, osteoarthritis, IBS, nervous stomach, and a arm's length list of many more things through the years, many of which I feel were sorely inaccurate as my faith in their professional guesstimates has greatly lessened after being repeatedly harmed further by their treatment suggestions via side effects. Especially after finally finding relief in other more holistic arenas as I continued to find folks who barter.

    It's hard to tell what kind of chemical breakdowns have taken place within this meat coated skeleton through the years, thanks to a combo of the CSA, teen rape, and years of hardcore domestic violence, not to mention all the stupid shit I used to willingly partake in during my "better living through chemicals" and drinking myself into blackouts days. Took many blows to the head. Sorry for the essay-length response.
  12. scout86

    scout86 I'm a VIP Premium Member Donated

    Sorry about your friend! She sings like a wonderful person. I'm glad you had each other as friends, even though I'm sure it wasn't long enough.
    Anarchy, ladee and KwanYingirl like this.
  13. LuckiLee

    LuckiLee I'm a VIP

    So sorry about your friend. She sounds like a beautiful person.
    Anarchy and KwanYingirl like this.
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