Ain’t dead yet – A cautionary tale

Ain’t dead yet – A cautionary tale.

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Ain’t dead yet – A cautionary tale

That’s right, I ain’t dead yet!  Came awfully close, but thanks to the wonderful care of the nursing staff on the 6th floor, and physicians at BWMC, I ain’t dead yet.  In fact, I rather think that not only am I back, but I’m better than ever before.

I want to share with the world what happened to me, because it could have happened to anyone.  First, some background information about me.  I am a business owner, cosmetic chemist, master perfumer and aromatherapist, a mom, a tribal matriarch, philanthropist, and more.  I suffer from Crohn’s Disease, diagnosed well over 25 years ago.  I have lived with Crohn’s for a very long time, and I know my body better than anyone.  I know what my flares are like.  They involve specific things beyond excruciating gut pain, like fevers, body aches, head aches, painful joints.  I also have not had these symptoms in over a decade, as my Crohn’s had been pushed into remission using ‘controversial natural methods’ (and that’s all I’m going to say about that for right now).

Approximately four years ago, I had an ovarian cyst that went undiagnosed for 5 months.  The only relief I found, was using over the counter Ibuprofen.  I went to my GI Doctor, who gave me more Crohn’s meds, which didn’t do anything to stop the pain, my primary care physician tried to send me to a shrink!  I needed a gynecologist and a sonogram!  Needless to say, I have a new primary care doc.

The cyst, which sonography revealed was real, and had twisted, ended up resolving itself.   I stopped using Ibuprofen so regularly, but it was still my go-to when I did have pain.  So after this loading dose, over the course of the next 4 years, I continued to use ibuprofen on and off (I admit, more on than off).

Approximately a year and a half ago, the pain became omnipresent.  ibuprofen became a regular part of my world.  I figured this had to be better than being on narcotic pain killers, and nothing else I had available to me was helping at all.

I am fully aware that ibuprofen can cause stomach bleeding and ulcers, but I ever had any symptoms of upper GI damage.  As time went on, my pain was omnipresent, and getting worse.  Ibuprofen gave me a precious few hours of relief from a world of hurt.  I hadn’t slept more than 3 hours at a stretch because severe cramping was waking me up nightly.  I was getting worse and worse, like I was spiraling down the rabbit hole, and no one was able to help me.

Doctors did tests, confirmed what I already knew, and couldn’t resolve the problem.  I kept insisting that there was something DIFFERENT about this “Flare”, I never for a moment believed that I was having a Crohn’s flare, no matter what the doctors kept telling me.  The fact that the Crohn’s wasn’t responding to the drugs it ALWAYS responds to was my first clue.  Instead, some docs even prescribed high dose ibuprofen to help me manage the pain I was experiencing.  It was effective.  It was also quietly causing ALL this trouble.

Flash forward to a month ago.  I had a lower GI Bleed, which is a classic Crohn’s symptom.  I ended up at the John’s Hopkins ER.  It was not ‘significant’, I got a few bags of IV fluids, they put me on prednisone, as well as the usual Crohn’s drug I use, and… wait for it.. 800 mg IBUPROFEN.  I felt SLIGHTLY better shortly after taking ibuprofen over the course of the next 2 weeks, until my cycle rolled around, i started cramping up, and… TOOK MORE ibuprofen, as I had been directed to do.

Nearly exactly one month later, I experienced a second lower GI bleed.  This time it was major.  I required a substantial blood transfusion (3 pints of blood is A LOT), and was admitted to the hospital for 2 days.

Here is what I learned.  Ibuprofen is an extremely powerfully effective pain reliever.  While its common to have upper GI issues with ibuprofen, sometimes, in rare cases, it damages the lower GI tract.  It is insidious in that it masks the pain it’s causing, while causing more damage.  The real kick in the head is that when ibuprofen damages the lower GI tract, it MIMICS CROHN’S DISEASE.

This explains everything.  I have been off of all ibuprofen for a week and a half, and am in better shape than I have been in well over a year.  Back on a low dose (20mg daily) of prednisone, which I hope my doc will start decreasing tomorrow, and I’m taking bentyl this time in addition to Asacol, which is my usual Crohn’s maintenance drug.  The pain is GONE – Back to when I was in full remission, which for someone with Crohn’s is a very big deal.

SO.  If you rely on ibuprofen for pain relief, please, please, I implore you to be VERY careful.  If you start feeling crampy lower stomach aches, stop taking it, and see a GI doctor.  Make sure you mention ibuprofen use.  That stuff is dangerous!

If you use the ibuprofen for aches and pains (not gut issues), try out Sirona Labs Original Formula for pain relief.

http://www.sironalabs.com/sirona_labs_emu_moisturizing_cream.html

 

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A special note from Misha Stewart regarding fundraising

It has been brought to my attention that there has been some questioning of my motives for becoming involved with fundraising efforts for the Capobianco family to help offset their legal fees in their battle to bring their adopted daughter, Veronica Rose home.   I’d also like to point out that it appears most of those who are questioning me and my motives happen to support the ‘other side’ of this issue, so I take it all with a grain of salt.  However, in the interest of transparency, I respectfully present the following:

Sirona Labs has always held a strong a philanthropic philosophy.  eg: previously, a % of Sirona Labs’ proceeds has been donated to such funds as Tsunami Relief Effort for Japan, various animal rescue organizations, adverse vaccine reaction research, and more.  Sirona Labs has always had a tradition of giving back.

I asked the family directly for permission to create this special item as a fundraiser for them before I did anything, including creation of  the fragrance, and set the terms with them privately.  Making perfume is what I do.  It was the only way I could think of to help them.

To  anyone who questions the motive of any company that  does not donate “100% of the proceeds” to what ever cause they are fundraising for I ask you this:  Are you insane?   Do you think the company that bakes Girl Scout Cookies donates and/or absorbs the cost of manufacturing, materials, labor, and other expenses?  Of course not!  They sell their cookies through the girl scouts, sharing the profits with them.  California Pizza Kitchen is another company that is known for their fundraising programs.  They offer 20% of the profits to their fundraising partners.

But because I am a small business owner with a cottage industry, and saw a way to help a family in crisis, I am then expected to not only be uncompensated for my work, this is after all what I do for a living, but I am also expected to contribute 100% of the start up cost of research, development and production of a new product, on a rush status.

These are hand crafted items.  I do not order in bulk from some Chinese catalog, rebottle and slap my own label on my items, as so many cosmetic and fragrance companies do.  My heart and soul is in everything I create, by hand, from scratch, made right here in the United States of America.

High quality perfumers’ materials are extremely expensive, and I refuse to use anything less than the best.  Also, it is important to point out talented ‘noses’ (the industry term for what I do) are few and far between, making our skills extremely valuable in the industry.  It’s just the nature of the perfumed beast.  There is a reason good perfume is a luxury item.  Believe me, I am taking a significant pay cut on this project because it’s more than just a cause to me, it’s personal.  Matt and I have been friends for over 25 years.  His brother is one of my closest friends, and I am heartbroken for this whole family.

And yet, some people are grousing that Sirona Labs is not donating 100% of all proceeds generated by the sale of Veronica Rose perfume to the family, accusing me of profiting off of a families misfortune.  Do you stop getting paid because your company is involved with fundraising efforts, as so many are?  Why do you demand that for me then?  Did you realize even employees at Non-Profit organizations get paid?  Don’t I deserve to put food on my families table too?  Pay medical bills?  Utilities?

I don’t think people realize, Sirona Labs is not a Non-Profit organization.  It never claimed to be one.  Sirona Labs is a sole proprietorship business, and I wear all the hats.  Not only am I the artisan and resident cosmetic chemist, but I do the back office work, I am the shipping department, accounting department, graphic designer, web mistress, public relations, advertising, and marketing diva as well.

Since I’m sharing, I might as well let you in on the fact that I also happen to be dyslexic, which makes all of these tasks extra challenging.

The bottom line is this:  If you think it’s wrong to do what my company and so many others who are trying to make a positive difference in the world are doing, then don’t support us.  Don’t buy our products.  If you want to be sure that 100% of your money goes towards the family, donate directly through the non-profit organization.  Here is the link – https://npo.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1004119

By making a donation directly, you can donate and forget.  By buying a product that supports your cause, you not only make a donation, but you then have a product, be it perfume, a rubber bracelet, or whatever, but you remember the cause every time you see and/or use the product.

If you want to do good when you’re buying the things you might anyhow, (perfume makes a wonderful gift, for example), then when you find yourself shopping for items, consider buying from companies who support causes you believe in.  You have the power to decide what you do with your money.

All good things,
Misha Stewart
Owner&Artisan
http://www.SironaLabs.com

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WWW stands for Wiley Walruses Worldwide, right?

www.Sironalabs.com

Yesterday I did not have a website.  Today I do.  Yesterday, it didn’t seem likely that it I would have a website any time soon.  Today, after years and years of failed attempts at both doing my own web design, and trying to work with others to get it done, I have an amazingly stylish, elegant, and best of all, functional website .

Even more exciting (to me), is after spending an entire day working at it, I am actually able to make small changes to my website on my own!  I am even setting up pages for when I am ready to add new products in the near future, based on the code already written for the website.  It’s incredibly nice to not be so reliant on others for each and every one of my web needs for a change!  Now I have an excellent site to start with, thanks to Theresa Ford, the author of Lawful Good Thief http://www.amazon.com/dp/B006T4NSHI
Without her help, the www.Sironalabs.com website would not have been possible.  I am  to be doing a trio of perfumes to support her book!  VERY exciting times, indeed!

www.SironaLabs.com

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Stars, stars, stars!

I found the perfect star bottles.  5 pointed stars.  They couldn’t be more perfect. They are exactly what I have been looking for.  I couldn’t be happier with them!  It always makes me so happy when everything falls into place.  Aren’t they pretty?

 

Veronica Rose FundraiserI was excited to have found them!  I received my first dozen, and  I was so delighted with them, I immediately ordered a gross more!  I gladly paid my money, and awaited my shipment, so that I could fill my outstanding orders.  Luckily I give myself 2-3 weeks lead time before customers should expect to receive my items.  They frequently receive their goods much sooner, but I like to reserve time JUST IN CASE the unthinkable happens.  Like this…

The phone rang at about 4pm yesterday afternoon.  It was the supplier of the star bottles, informing me that my treasure had dried up.  They did not have even the gross of promised star bottles in stock, and would not be getting anymore in, ‘would I perhaps care for a clover shaped bottle?’  Would I care for a clover shaped bottle?  NO I WOULD NOT CARE FOR A CLOVER SHAPED BOTTLE, SIR!  Good day to you!  That’s what I’d have LIKED to have said, but instead I agreed to take the last of their star bottle inventory, 60 in total, and the rest would be clovers.

This morning, I found a NEW supplier of star bottles, who also will not be getting anymore in after they are gone, but has many cases of star bottles in stock, and they assure me they are not a very popular item, so they do not anticipate the bottles selling out on me any time soon.  The Stars will be around a while longer!

On the bright side, it’s not a total loss with the clover/star bottles.  The supplier agreed to refund my purchase price if I returned them.  Can’t argue with that.

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Veronica Rose Perfume Fundraiser Day 2

The fundraiser is off to a great start!  The sales are starting to come in!

Funds raised for the Capobianco family as of 12:32PM EST – $75!

Let’s keep this going

Don’t forget to share this link to the fundraiser with everyone!
http://www.etsy.com/listing/90162716/veronica-rose-perfume-1-dram

Don’t forget to visit http://www.SaveVeronica.com for updates on this tragic story.

~ Misha

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Philanthropy and Perfumery 2 great things that are great together!

After a long health based absence, Sirona Labs is back and better than ever!  Something happens to you when your body fails you.  You can see past yourself much clearer, if you’re lucky.  I’ve come out of the other end of my ordeal with a mission and a clear vision of how to get there.  Introducing the Perfume Fundraisers!

Though the idea only came on New Year’s Eve, 2011, the tempest had been brewing in the teapot for quite some time.  My friends, Matt and Melanie Capobianco were ordered by a judge in South Carolina to surrender custody of their precious, adopted daughter, Veronica Rose to her biological father, a man whom she’d never met before.

I was beside myself.  As a mother, I couldn’t imagine having my child ripped from my arms, shoved in a pick-up truck with utter strangers and taken off to ‘her new life’.  Maybe because they happen to be longtime friends of mine, so it felt closer than just a typical sad news story, I became obsessed with their story.  How could I possibly help them, what could I do?

I meditated on it, daydreamed, and it became painfully obvious.  A custom  perfume.  It’s unique, it’s fitting, and it’s something that I have a talent for. I ran the idea past the family, and with their blessing, I started working on her namesake perfume, Veronica Rose.

Using her name, “Rose” as a starting point, this delightful confection of a fragrance honors Veronica’s Aztec/Mexican Heritage with elements of vanilla, and her Native American heritage with sweet grass, cedar, and sage. One of Veronica’s favorite things is cake, so there are elements of birthday cake to this fragrance as well; Tart fruits, complex herbal and botanical bouquets, and a soft downy finish round out this soft, playful, feminine scent.

If you aren’t familiar with the case, here is some background information for you.   You might have heard on the news (local South Carolina news outlets as well as CNN coverage and expanding daily) that on New Year’s Eve, 2011, little 2 year old Veronica Rose was taken from her loving, adoptive family by court order, and handed over to her biological father, a man whom she’s never met.

This child’s civil rights are being roundly abused in favor of a law designed to protect Native American children from falling into the foster care system, something that Veronica Rose was never at risk of, as the beloved adopted child of the Capobiancos. The very author of the ICWA (Indian Child Welfare Act, the law the biological father, who is enrolled in the Cherokee Nation invoked to retain custody of Veronica Rose) said this particular case was a tragedy.

The Capobiancos are appealing the court’s decision, but this is going to be a long and expensive process.  This is why the sudden and drastic change in my approach.  I saw a way to help pay for the legal expenses.  Don’t worry, Sirona body products are still available, but now there will be fundraiser perfumes featured alongside of Sirona’s core original products.

http://www.etsy.com/listing/90162716/veronica-rose-perfume-1-dram

Don’t forget to read and sign the petition for Veronica Rose located here:

http://www.change.org/petitions/save-veronica

If you would like to do a perfume fund raiser for your organization/club/team/school or cause, please send email to misha@SironaLabs.com and we’ll talk!

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