Saturday, March 29, 2008 selling Awareness Ribbon Ornies

What the heck is an "ornie" you ask? I wondered that myself, but figured any friend of mine who's selling them must know what they are doing. I got a free one in an order of candles that I got from her. I'm addicted to all the scented stuff she sells from the jar candles to the bath products, it's all top quality and hand made to order.

Turns out, an "Ornie" is described as follows:
These air fresheners are made made from clear polymer beads that are colored and scented and then baked into shapes. The finished product is a beautiful air freshener that resembles stained glass but feels like plastic and is flexible and unbreakable.

I mentioned to her that I would like an Ornie that she sells, only in an Awareness Ribbon shape and to be the MS orange color. She then came up with the idea of doing Awareness Ribbon Ornies and donating a portion of her proceeds to your charity of choice. I was touched by that idea and told her if she got the product up there on her site, I would blog about it and try to get her some business.

I've been hooked on her products for a couple of years. All her scents are scrumptious and fit any occasion. If I'm having a good day and want everything to smell like roses, I get out my candles and voila! Rose Garden! If I'm down in the dumps and having a bad day, all it takes is the scent of Apple Pie to bring me around.

And the best part is she's selling all this stuff at AFFORDABLE prices. I'm not related to Donald Trump, so I have to count my pennies and scrimp and save to make ends meet. I quit smoking so I figure I can indulge in something that makes my house smell good instead of like an ashtray for a change.

These ornies are ony $2.75 each and the fragrance lasts way longer than any other air freshener I've come across.

She had a fire last year and her home burnt to the ground along with her business (she's a stay at home mom who is into making candles, melts, soap, bath bombs, silky suds bath powder, and ornie air fresheners and selling them online). She's trying to get her product line reestablished as she had to start over from scratch.

She's been there for me during my worst of times MS wise, so I thought I could give her a little shout out here to help get the word spread about her wonderful products.... returning the favor.

Here's a link to her product page with the Awareness Ornies:

Pick any scent you like. Find out what all she offers (in scents) here:

You get to choose the charity to which she will donate 15% of her proceeds and the NMSS (National Multiple Sclerosis Society) is one of them.

Tuesday, March 25, 2008

The Placebo Effect

As defined on, the Placebo Effect is:

Placebo Effect
Healing effects which are based on the person's own self-healing capacity, but which is triggered by the belief that they are receiving an active medication.
Now, I realize that the clinical trial I am in, CFTY720D2302 aka TRANSFORMS, has no placebo, so there can be no true "placebo effect" for me, but the idea that this phenomenon has been documented and has a name fascinates me.

"Healing effects which are based on the person's own self-healing capacity..." Does the very definition concede that we have the capacity to think ourselves well just with the power of the brain?

It brings to mind cartoons of the coyote and the road runner...where the coyote runs off the cliff while chasing him. He treads air for a while, staying up there. It's only when he looks down and realizes that there's nothing beneath him but a thousand feet of air that he actually starts to fall.

Is that what a placebo effect is like? Do people in trials that have a placebo want so badly to be getting the real thing that they are treading air and doing great simply because they think they are?

What if I pulled apart one of my supposedly Fingolimod capsules and found out there was nothing inside, and then had my shot substance tested only to discover it was sterile water? What if I wasn't getting any real medication at all, but this experiment was all about the Placebo Effect?

A big, elaborate test where you have to convince the patient to be a willing participant who knows they have to be getting some kind of real substance, but in actuality it's all fake and they are recording how well you self-heal based on the idea that if you are made to believe you are healing or in remission, then you will heal or go into remission regardless of the substances you ingest or inject.

I have always been a very impressionable person. I remember once I had to have an injection of dye for a CT I was having. I knew that it could make me feel warm all over and had some other noticeable effects. I had my eyes squeezed very tightly shut so I couldn't see her poking the vein in the crook of my arm. But seconds later I said "I smell something funny...I have a weird taste in my mouth!" and I started to panic.

She said "That's odd because I wasn't able to get into your vein good enough in that arm and I'm going to have to try the other haven't gotten any of the dye yet."

That's just how it's always been with me. I can imagine very real, very scary side effects of imaginary things. So, what if all the benefits I am experiencing during this clinical trial are all of a self-induced, self-healing nature?

I'm sure the trial involves one of the two very real substances they said I would get -- either FTY720 or Avonex -- but what if all these great results are not really from what I'm taking but because of the power of wishful thinking? I'm so psyched up about this trial that I am not willing to let myself consider the possibility of having a relapse.

Kind of like Mitt Romney's wife thinks she's put herself into remission with Equine Therapy. That would never work for me because I hate horses. There, I said it. Yes, hate me if you want, but I don't like horses. I've ridding 2 and got thrown to the ground by the first, and the second one decided he didn't want to go up the hill on the path. Oh no, he wanted to run down the hill under every low branch he could in order to knock me off, so I'm a horse hater.

No, what works better for me is to give me a pill and say "take this every day and you won't have any more MS relapses." "maybe."

Oh, and be sure to scare me by saying "if you miss taking it for 8 straight days you will have to be observed by a cardiologist upon redosing." Wow! That did it for me. I have missed a total of 2 pills in the last 6+ months. Both times it was on a day I went out of town with my mother and sister on a rare family outing. I was an hour's drive away each time I said "Doh! I forgot my pill today!"

And the shot could be the real thing, but I have convinced myself so completely that I have real Fingolimod in my capsules that the shot has got to be sterile water. Pretty cool trick if I'm getting the real Avonex then because I have all the side effects from it that you'd get with sterile water.

I'm fascinated by this Placebo Effect stuff and the power of the mind. There's a lot of MSers out there who are sick of hearing "just think positive thoughts" when being told by well meaning folks how to control their disease. The truth is, there's no real controlling of does what it darn well wants to.

But if I can keep myself treading air just by taking these pills, then I don't want to look down because I'm happy believing I'm running on solid ground.

Monday, March 24, 2008

And now for something totally unrelated...

I got Japanese spam today. I wonder how my gmail determined it was spam. And how do I know if gmail got it right? It might be an important message that I just can't read. Should I go ahead and Delete Forever?

On a side note, I'm getting really sick of all those spammers assuming that since my name is Jeri I must be a guy and an inadequately endowed one at that. Note the subject lines of the other emails. *sigh*

Sunday, March 23, 2008

A glimpse of me through other eyes.

Today is Easter. (Happy Easter)

The family tradition is to gather at my mom's house and gorge ourselves on all kinds of food, usually prepared by my sister even tho she'd really like to take ONE holiday off and not cook, but that's another story and if she wants to complain about it, she should start her own blog. (Wow, am I Queen of the Runon Sentence or what??!)

My eldest brother has a new girlfriend and has been MIA at the past few fact, I can't remember when the last time I saw him actually was, but I'm thinking it's been a pretty good while.

I was really eager to see him because the topic of my hair, and how it needs to be cut, has been the first subject to come up every time we get together and since I cut a foot of it off since last time I wanted to see if he'd notice. Nope. I had to ask him if he liked it. He did, but mentioned that another 6" or so could come off. HAHAHA

He did tell me several times that I look great since the last he'd seen me. He said I'm no longer "tentative" in the way I move around. I guess I used to walk like I expected to keel over and fall down, or like my legs would buckle. Anyhow, he said I looked great and it made me feel wonderful. He was happy to hear it's been 10 months since my last relapse and I filled him in on as much as he cared to listen to about the trial. I can go on and on and bore people to death with all the many fascinating facts about this trial when they only asked "so how have you been?" in a rhetorical way.... not really expecting a play by play reenactment of everything that's happened since the last time I saw them.

Other people have hobbies that interest them. I have this trial. It's the only real excitement going on in my life at the moment.

So here he is looking at me, as I take my gamble with my life/health/MS, and what I see in the reflection of his eyes is mirrored back at me. I'm holding a winning hand. You just can't beat an Ace high straight flush. I'm seeing that in the many months it has been since I last saw him, I have made an impressionable improvement in my health. It's so reaffirming that it's got me all pumped up. Come on, Fingolimod...momma needs a new pair of nerve endings!

It beats the heck out of people whispering in the other room that you seem to look like you've taken a turn for the worse. This is much MUCH better!

Until next time, may you be relapse free or at least having a good day!

Happy Easter, ya'll.