A doctor who listens: priceless

[A portion of this post was originally posted on Sherri Blossoms on January 21, but it’s relevant here, too, so rather than rewrite it all, I’m copying it.]

I went to the doctor last week, finally. I haven’t been since I found out for sure I was having a reaction to fragrance. Besides the cost, I wanted to wait until I had eliminated as much fragrance from my world as possible, to stabalize and see what healed and what didn’t. It seemed to be going pretty well, and then The Time of the Migraine hit the reset button, and I knew I couldn’t wait any longer.

I ended up crying at the doctor’s office. I feel pretty dumb about the blubbering, but it just serves to show how frustrated I am by the whole thing, how much I really need to figure this sinus thing out. The X-rays showed nothing abnormal (it so cool to see inside my own skull) so he gave me a course of antibiotics and steroids.

I told Doc I’d been dealing with this problem for 6-7 years, but as I look back I think it’s been closer to eight or nine. I’m not sure if Doc believes me when I tell him how my old doctor dealt with these chronic problems. With the backward lens of time and experience, it seems like the old doc hated me. I wish I could see what he wrote about me in my chart.

It won’t surprise me at all if antibiotics clear it right up. The old doc refused to consider it. I love having a doctor who listens to me, even when I’m crying.

And oh yeah, I told him about the fragrance thing and he didn’t laugh at me. He didn’t get defensive. He didn’t dismiss it. He said some people have sensitive airways, and that was it. I’m hoping that the fragrance sensitivity will shake out when my sinuses are healed. I’d probably never go back to the old level of stinkiness, but at least I’d be able to be around people again, which means writer’s cons and a job and TCoB in general. To be normal would be the height of awesomeness.

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Emerging from The Time of the Migraine

I have officially emerged from The Time of the Migraine. I say “officially” because it’s been a whole week since the constant threat lifted, and though I’ve had setbacks over this week, they were temporary and quite manageable.

I guess the extra stinkiness of the holiday season had me worn down to the point that I couldn’t heal up. I finally took to wearing a painter’s mask–you know, the kind that blocks paint fumes, fabric with a little yellow respirator on the front–to the store and when the kids got home from school, because the slightest whiff of any scent whatsoever caused immediate pain in my sinuses and eyes. The Time of the Migraine lasted two whole months, in which my husband had to do way more housework than he cared to,I  scarred my step-daughter for life when her visit left me clutching my head for three days, and I looked like a total Froot Loop having to wear that mask in public.

I will wear it whenever I need to, despite my lower hotness-factor, because the thing really worked. It blocked all scents, even vinegar (which I don’t have a problem with, but it shows the merits of the mask) and by wearing it in smelly places I was able to stave off the migraine for longer periods. I highly recommend getting one of these masks. I found mine in the paint section of Wal-Mart for five bucks, but I’m sure they carry them anyplace they sell paint.

My sinuses have given me trouble for years, and they are the root of my migraines. I’m pretty sure my sensitivity to fragrance arose gradually from the chronic sinus problem rather than the other way around, though I can’t be sure. I have thyroid issues, as well, so it’s hard to know where hormonal misery ends and sinus misery begins. But I finally have a doctor who listens and a course of treatment that may clear it up. My ultimate dream is for my sinuses to work perfectly, to be able to smell any damn thing I want to, and to never have a migraine again.

I’ve been nominated for an Okie Blogger Award!

New reader Georgie said:

Stopping by visiting all the 2008 Okie Blog Award Noms-Congrats on your nom!!!!

And I said, “Huh???” I thought there must have been a mistake, but nope. It’s true. Poison Scents has been nominated for an Okie Blog Award in the “Best Unusual Blog” category. Am I the only fragrance-free blogger in Oklahoma? I guess maybe I am. I always knew I was a weirdo.

So to whomever nominated me, I am honored. Surprised and honored. Thank you.

Here are the voting instructions, as per the Okie Blog website. I can’t vote for myself, but I’d be grateful if you could force all your Okie friends to vote for me. 😉

Voting

Only Okie bloggers with active Okie blogs at the start of nominations (Jan. 2) are eligible. “Active” is defined as having at least one blog post during the last 60 days of 2008. An “Okie blog” is defined as having at least one active blog author residing within the state of Oklahoma. All Okie Blog Awards are decided only by Okie bloggers. A blogger cannot vote for his or her own blog.
A blogger can only vote for one blog per category.
The voting period ends on Feb. 7, 2009.
Copy and paste the following entry list with your vote for each and send to obawards08@okiedoke.com

Categories

Best Overall Blog ——
Best Political Blog ——
Best Family Blog ——
Best Humor Blog ——
Best Audio Blog ——
Best Looking Blog ——
Best Unusual Blog ——
Best Writing Blog ——
Best Commentary ——
Best Culture Blog ——
Best Inspirational Blog ——
Best Commercial Blog ——
__________
You must include a link to your own blog in the email.

Your blog address ———

I haven’t been very posty on here lately, but I have a good reason. Fragrance-related, of course! I’ve been in Migraine City for the past couple of months, and can’t seem to get caught up. Plus, it seems like everything I think about posting has some sort of “poor me” factor, and I just can’t stomach that right now. However, I had a good doctor visit yesterday, so I do have something good to report in the days to come.

Thanks again for the nomination and the millions of votes I will get!

Reader question: How do I handle a co-worker’s perfume?

Lori told her story in the comments. She writes:

It happens the moment the receptionist walks in –it feels like I have been hit and the nausea and blurred vision starts I feel weak.. Shortly after I feel like vomiting and end up with a headache/migraine tighten up the smell is so overpowering and then have to sit here for 8 hours at work –What can one do ??

And my reply:

Wow, Lori, that sounds so much like what I go through. I say you have no choice but to ask her nicely to stop wearing perfume. Luckily, I don’t work around other people, but I have had to ask the teachers at my kids’ schools not to let them use the scented soap. I felt like a jerk asking, but they were very kind about it, even if they were also a bit confused.

You can tell the receptionist that you feel bad having to ask her, but perfume gives you a migraine. Make sure she knows it’s ALL perfume, so she won’t be defensive. And then if she complies and it works out, give her a little gift of appreciation. And if she refuses, talk to your boss about it. Refer him to this website, if you like, or one of the sites I link to. You could also print out some of the information to hand them to read at their leisure.

It’s your health and livelihood at stake here. Yeah, the way someone smells is a very personal thing, and asking them to change that is a huge imposition, but gosh, would YOU want to make someone feel the way her perfume makes you feel? It’s only perfume. It’s not like you’re asking her to get a buzz cut or wear uncomfortable shoes.

And you never know…She may be feeling bad and not know why. Other people in your office could have the same problem as you, but be too afraid to say anything. Put some feelers out there. You never know until you ask!

Next post will be another reader question. Send your questions to sherri@sherricornelius.com, or leave them in the comment section.

Today: Wal-Mart. Tomorrow: the world!

From the comment section

I just saved a comment from the spam pile. Daniel writes, “Flame retardants do outgas from electronic devices and they are toxic in many ways. they are neurotoxic, immunotoxic, hormone disrupting and endocrine disrupting.” I’d like to direct you to his website, Outgas Report, which links to a ton of information about the problem of outgassing. Much more than I could ever list here. Thanks for visiting, Daniel!

Another commenter, Julie, said, “I researched this problem because I have severe allergies to scents and chemicals, like bleach and other normal household cleaners. All I could find was to see an allergist.” Julie, what cleaners do you use? How about your family’s body products? Have you been able to find any you can tolerate?

~~~

I’m sorry I’m not more organized on here, y’all. It’s mostly due to laziness. Well, laziness plus my other blog seems to suck my blogging time. I’ve thought about doing some in-depth posts on, for example, the FF products I use. But that requires concentration, organization, multiple links…ugh! I’m more of a community organizer than a drill sergeant. It may have something to do with my sleepy chemical-laden synapses. 😉

One interesting development to report: At my local Wal-Mart I requested they carry a certain free and clear dish detergent which I have been buying at Wal-Mart in another town. I talked to a lovely associate named Cara, who listened patiently as I lamented my difficulty in finding FF products as well as the symptoms of fragrance sensitivity. She took my name and number and said she would speak with her manager and let me know what she found out.

The days went by, and I didn’t hear back. I expected that Cara had handed off my number to management and went about her business, and that management either didn’t order the product I wanted or they didn’t think about calling to let me know.

Well, Cara herself called me yesterday, just to let me know what was going on. It touched me that she had taken a personal interest in my plight. She said that they were still waiting to hear back from the buyers, who were not only ordering the single product I’d requested, but also looking into what other fragrance-free products they could find. Hallelujah! Hopefully they’ll come up with some shampoo, which I also mentioned, and lots of things I didn’t expect.

The moral of the story: It never hurts to ask. And sometimes you get an answer which goes beyond the query. Now I’m thinking of writing up a letter to the editors of my local newspapers. I have dreams of being a paid FF consultant for Wal-Mart, relocating to Bentonville, AR, and making sweeping changes in the world of retail.

But those things would require concentration, organization…well, you know.

You don’t know how I feel

On Good Morning America I saw a report about a lady with MCS who built a shed on her property as a trigger-free zone. It’s made of metal and contains only metal and glass objects and blankets made of organic material. A judge ordered the woman to remove the shed because they didn’t get building permits or inspections.

I’m not arguing about the legal aspect of the story. What upset me were some of the comments calling this woman, and by association all MCS sufferers, insane. To me, it smacks of the medieval folks’ belief that disease was caused by evil spirits, simply because they didn’t know about germs yet.

It’s simple. We are surrounded by synthetic chemicals; thousands of new ones are manufactured every year. MOST of these chemicals are not studied on the human body before they are introduced into products meant for mass-consumption. In fact, a lot of the chemicals we are exposed to in everyday products such as perfume and air fresheners are known carcinogens. It boggles my mind that more people are not at least considering the connection between rising chemical exposure and rising rates of autism, asthma, ADHD, depression, and cancer.

Some naysayers point to lack of research in the area of MCS as proof that it doesn’t exist. A flawed argument. A couple of people said that in a study they read (but didn’t provide the link) that certain MCS sufferers were exposed without their knowledge to substances to which they claimed sensitivity, but incurred no reaction.

First of all, if the study was real, I concur that their symptoms may have been psychosomatic. That changes the nature of their illness, but not of mine, and not of all MCS sufferers. When the symptoms come first, all other treatments have failed, and removal of certain substances relieves the symptoms, that’s about as empirical as a person can get outside the laboratory.

When I’m having a bad sinus day, I might suffer for several hours wondering why, then go outside and realize it’s my neighbor’s laundry day. Her dryer vents right between our houses, and the smell of the dryer sheets she uses hangs in the air. After this happened several times, it became clear to me that the fragrance chemicals seep into my house in low enough concentrations where my nose can’t detect it but my sinus tissue is still irritated by it.

Something that non-MCS sufferers might not know is that the effect can be very subtle. So subtle that even the sufferer herself may not attribute her slight headache or reduced cognitive ability to the trigger. It’s extremely difficult to measure the reactions, because it’s more of a quality of life thing than a yes/no thing. And the triggers can be widely varied, as can the reactions, plus we’re normally exposed to many substances at once so it can be hard to separate them. I could easily see where a person with MCS might attribute her symptoms to a red herring trigger.

Formerly doubted illnesses like chronic fatigue syndrome, fibromyalgia, and depression are now recognized by the mainstream medical community, and I’m certain that as more and more people come forward, MCS will be widely accepted as a legitimate illness. Still, as with the aforementioned diseases, there will always be those who believe other people don’t know how they feel.

More resources for MCS

My fellow fragrance sufferer, Mason, left a comment on the previous post with some resources that he found helpful, so I’m pulling the comment up here into a post. It would be a shame if someone overlooked some vital info that was buried in the comments. (Hope you don’t mind, Mason!)

Mason said:

I have found several sources of information. I’ve been finding similar themes in what I am experiencing and what other people call multiple chemical sensitivity or environmental illness.

So I started looking for groups focused on those things and I came up with lots of good results.

planetthrive.com
communityzero.com/mcsurvivors
And several groups on yahoo.com

All of these websites contain lots of valuable information. I would encourage you to read through some of these pages. From what I can tell, my experiences are not nearly as bad as others, and they have some good advice based on experience. For example, I was recommended Alka Seltzer Gold, and so far it seems to relieve some of these symptoms.

Also,

http://www.epa.gov/iaq/voc.html

That will explain some things about toxic off gassing.

It is a rollercoaster of a ride. Just take it easy, and enjoy the moments of relief when they do come.

I agree, there’s an obvious correlation between my fragrance sensitivity and Multiple Chemical Sensitivity. In fact, I have a couple of links over there in the sidebar that leads to even more resources.

Thanks, Mason!