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3/15/2009

"Jeanne's Endo Blog": Interstitial Cystitis & Hot Peppers

This is a follow-up to yesterday's post about interstitial cystitis, a common co-existing condition to endometriosis.

I was just reading the latest Cafe ICA and came across this snippet about IC research and hot peppers from January 2009:

Nerve Type that Responds to “Hot Pepper” Pinpointed

Related link:

Saturday, March 14, 2009 "Jeanne's Endo Blog": Interstitial Cystitis Is A Common Co-Existing Illness To Endometriosis... See Article About Interstitial Cystitis...

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

6 comments:

Amanda said...

Hi Jeanne,

I hope you are feeling much better now after your scare with the meds? We are finally back online and I am slowly working my way through everybodies blogs to catch up with all I have missed - fancy being offline during Endometriosis Awareness Month of all months!!

Anyway just checking in to say hi and that I loved the vlogs (haven't listened to them all yet but love the idea especially that I now feel like I know you even more - there really is something about hearing someone's voice and how they intone different things etc).

Take Care and speak soon
Amanda xx

Jeanne said...

Amanda,

Well, I'm past that scare. The latest was that I developed an infection last week and it was spreading rapidly.

This, of course, came to my attention at the end of the day. So my primary care physician's office sent me to the "After Hours" clinic to get it checked out. (This is where you can go in the States if it's after office hours, it can't wait, and you want to avoid the emergency room).

Anyway, I went to "After Hours" and when I opened the door to enter the building, I knew I was in trouble! They had the most potent "air freshener" I have ever smelled and I felt like I might very easily faint. (This would not be a first for me. I have multiple chemical sensitivity. I've been known to faint from much tamer smells than that).

I was ticked! Many people aren't aware of it but "air fresheners" contain toxins like carcinogens and neurotoxins that are dangerous for everyone. MCS patients get sick from exposure to them in ways that are readily apparent but the long-term effects of these chemicals is bad for everyone.

So, I was not happy! I had to actually wait outside (literally outdoors... it was 33 degrees) until they were ready to take me back because there was no doubt this one (mounted in the waiting room area directly facing the check-in counter!) would definitely have caused me to faint.

The fresh air outside was actually very welcome after being at the check-in counter just long enough for them to load my insurance info into the computer.

I had explained when I was checking in that I'd be outside (and why). The staff discussed where to put me that would be furthest away from the multiple "air fresheners" in the building. They ended up treating me in the supply room.

When they came outside to get me and take me back to the supply room, I was hopeful that I was going to get in and out of there quickly and away from the ridiculously strong air fresheners.

No such luck. I was in that supply room for what seemed like forever!

The good news was that this room was was better smell-wise.

The bad news was that I was still in the same building with the offending "air fresheners", though... and that they had stuck one very painful metal chair in there for me to sit on.

Between my fibromyalgia and neuropathy, this chair was very, very painful!

So painful that I ended up standing for most of the time I waited to be checked out. This is a big deal because my neuropathy in my feet is bad enough that I don't normally ever stand for long periods of time! It's too painful. So you know that chair had to be really, really painful.

In this case, it was less painful to stand up than to sit on that metal chair (the most uncomfortable chair I have ever seen anywhere). Sigh.

Anyway, now I get to write a letter to the clinic director educating him/her about the dangers associated with the chemicals contained in "air fresheners". As if I don't have enough letters to write with Endometriosis Awareness Month, right? Sigh.

I'm glad to see you back online. :) So I'm guessing you were offline for your move? I'll have to check your blog. Don't worry. We can't always conform out lives to things like awareness months. There are only so many hours in a day.

I'm glad you checked in. I'm glad you like the vlogs. Yes, watching a video of someone in addition to reading their writings does give the feeling of "knowing them" a bit more. Maybe someday I'll get to hear your English accent when you starting vlogging, huh? :)

Take care and be sure to get enough rest with everything on your plate...

Jeanne
xx

Amanda said...

Hi Jeanne,

That sucks about the after hours office - I hate it when people really don't think about things... like over here whilst caring for people in wheelchairs I have noticed how utterly useless disabled toilets can be and I am shocked they are passed as "accessible" when you can't even fit a wheelchair in them or there is no place to change somebody so you end up laying them on the floor of the toilet (how horrible is that?!) Actually I've asked for and being given the task of updating and improving the disabled guide that the tourist office gives out to visitors because although it is better than nothing it really could be much better - I am looking forward to getting my teeth into that one and making it a really useful guide for visitors.

How is the infection now? Are you feeling better from it? I cannot believe that they had to put you in a supply room on such an uncomfortable chair!!

The vlogs were great - I've sometimes thought about doing one but never really knew what I would talk about lol - I'd love to do one though because I have a fairly common English accent (no Queen's English for me!) I come from the north east of England and although my accent isn't as strong as say the Scouse or Geordie accents it is definately different to the ones most often heard on American films which are very stereotypical posh accents or the opposite end of the spectrum - cockney hehe Tim is often taking the pee out of me because he comes from Cambridge where the accent is far posher than where I come from and he says "barth" and I say "bath" and he says "parth" and I say "path" etc though I guess if I'm living in Cambridge I don't have a right to really complain hehe


Right I'm off now to sit in the garden and do some crafts - don't know what crafts yet I'm just going to make the most of my holiday and do something I love but never get chance to do!

Take care of yourself
Amanda xx

Yaya said...

NO WAY. I KNEW IT! Peppers ALWAYS give me a funky reaction.

Jeanne said...

Alicia,

I thought of you when I read that because you had mentioned your peppers-issue previously.

Another clue for possible IC, you think? I know you have suspected.

Jeanne

Jeanne said...

Amanda,

Yes. I was pretty steamed with the whole "After Hours" clinic and the "air fresheners". It's at the top of my to-do list for blogging (that whole MCS nightmare). So is acupuncture. So much to blog about. Not enough hours in the day!! Overwhelmed!

Good for you increasing accessibility for the disabled! You go girl!

The infection is 99% cleared up. It's that last 1% that just doesn't seem to want to go away. I'm done with the antibiotic though.

I'm nauseous and tired and about to go to bed.

I know. That chair totally sucked. You have to remember that they looked at it like they were doing me a favor. Seriously. Putting me in a "special room" and taking the time to grab a chair for me... I'm sure they thought they were going out of their way to be helpful. In the meantime, I was in AGONY.

I can't wait to hear your accent when you do your vlogs. Yes, you heard me right... "when you do your vlogs". Seriously, I think you'd love it. Plus I'd get to hear that accent. Remember, I'm used to the posh movie English accent. :)

Please check out my YouTube channel:

http://www.youtube.com/user/
jeanneendo

I'm just starting to promote it. I'm looking for ratings and comments on the videos and for subscribers to my channel. :) I'm already meeting other endo vloggers and health vloggers. :)

Trust me. You'd find something to talk about. If you need inspiration/ideas, watch other people's videos. I have a couple of subscribers who do endo vlogs too. Just go to my channel and look at subscribers to find them.

So please check out my YT channel when you can and be sure to comment and rate my vlogs and think about subscribing too. :)

It's weird. This comment and 1 other from you never sent me an email notification! Darn that Blogger. I can't wait to switch to Wordpress. Anyway, I found these 2 comments by accident in the dashboard. (I always moderate comments from email, not dashboard).

So I'm glad I saw them. I've never had it not give me email notifications before! Strange. Classic Blogger, though, in my experience. I've had horrible luck with Blogger. I can't wait for my new blog. It will be very different.

Anyway, thanks for stopping by.

Take care of yourself,
Jeanne xx

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