Saturday, May 23, 2015

Medicare Barriers To Treatment

Until you really get sick you may think Medicare works pretty well, but over the years there has been a gradual erosion of benefits. The Medicare fund has been quietly pilfered and reappropriated piece by piece for a long time. Many doctors have opted not to accept Medicare at all and some who used to accept it no longer do because of its complex system of paperwork and its maze of requirements, many of which make no clinical sense. Those doctors who continue to take Medicare patients are often "trained" to adopt a sense of futility when trying to obtain prior authorization for certain treatments. This places them in a difficult ethical position, as there's a great divide between what's best for the patient and what can be obtained reimbursement-wise.

Identified as having a rare and atypical breathing pattern called Biot's Breathing my pulmonologist recommended oxygen for my condition but warned me "get ready for a big fight". Little did I know I was about to embark upon a long, arduous process which more closely resembled an obstacle course than prior approval just to get the life-sustaining substance my doctor was to prescribe. As my respiratory symptoms worsened in the ensuing weeks, I began to wonder whether I might have a stroke or a heart attack by the time the underlying hypoxia was treated. One especially severe episode left me with tinnitus in my left ear and shot central nervous system pain down my arms and legs. There were nights I held on by my fingernails, wracked by severe central apneas, shortness of breath, chest and lung pain, faintness, sudden bouts of bowel urgency such that I thought I would crap my pants at a moment's notice, and even episodes of sleep paralysis in which I was fully aware I couldn't breath but was unable to move or do anything about it. At 2 AM I often found myself wondering whether I should go to the emergency room, or even whether I should be admitted to the hospital for my own safety. I was at home alone with a force that was playing "chicken" with my life. For over a month I white-knuckled it at home, every night hoping I would wake up the next morning, while my symptoms during the day became even worse than those I experienced at night, a few hours on, then a few hours off.

Several times I became very sleepy when I was out grocery shopping and actually fell asleep on my feet nearly falling to the ground.

Meanwhile my doctor and his nurse were trying to find a medical equipment vendor who accepts Medicare, which took nearly a month. Then came the first hoop to jump through.

In order to qualify for portable oxygen I had to take what is referred to as "the 6 minute walk test." If you can pass that chances are you can't go out anyway, LOL. What they do is hook you up to an oximeter to measure your blood oxygen level and have you walk back and forth down a hall for 6 minutes. If during that 6 minute time-frame you desaturate to 88% or below then you can qualify for Medicare to cover a portable oxygen unit. The technician kept telling me to breathe the whole time (more than was natural for me), so of course I didn't cut it, and as it was still early in the day my full spectrum of symptoms hadn't kicked in yet.

After several more weeks of respiratory agony Medicare finally authorized nighttime oximetry at home so that I could gain the "proper" evidence that I was desaturating at night. One company didn't respond, so my doctor's nurse had to call another. They were supposed to call me and didn't. Then one day they just showed up at my door with the oximeter and no explanation as to why it took so long. The other company then called wanting to bring their equipment over, so I had to tell them the other company beat them to it. It wasn't a total loss though since I had a very interesting conversation with the man on the phone about "compassionate use" letters, as he told me that he'd just received a memo that morning stating that Medicare could take a letter in the absence of sufficient data from the two tests if a doctor could state that;

1) There is no approved drug that cures the condition.
2) That other options have been tried and failed.
3) That oxygen would relieve the patient's suffering, has a likelihood of helping, and will give the patient better quality of life.

In the nighttime test I had to desaturate to 88% or lower for a total f 5 minutes in order to qualify for nighttime oxygen. That night I hooked it up to my finger, lay down, but didn't get much sleep, since this was the last test which ultimately would determine whether I'd get oxygen at all, and the pressure had me on the edge of my seat. The next morning I wondered whether I had obtained the information sufficient for Medicare's requirements and worried I may not have because I'd had so little sleep. To cover all bases I prepared my doctor to write a letter of necessity just in case, because at that point things were getting pretty rough.

A week later the results came in and it just so happened that I qualified under what they call  "Group 1." In a few more days the equipment vendor brought out an oxygen concentrator, tubing and other parts. I felt relief within minutes the first night. Before I fell asleep I felt more energy, mental sharpness, and the shortness of breath was much less. I could feel the upper part of my lungs that had often felt stuffed start to ease up, cough improved, my nose was clear the next morning and even my baseline pain was reduced. I could tell that I had been hypoxic for many years because I can't remember when I felt that normal.

This was a good start, but I found it only carried over for a certain number of hours after I was off it the following day, and if I went out it wouldn't take long for the symptoms to return. On hot days I get winded now even sooner.

In addition I hadn't anticipated that I would be allergic to the plastic in the cannula that went in my nose after the 2nd day of use. After about 4 days I had a big pus-filled sore between both nostrils where the plastic made contact, and my body was mounting a big inflammatory response making my nasal passages swollen and the stuffiness returned. I tried a mask instead which did get rid of the allergic response since the plastic didn't touch the inside of my nose, but I found that there wasn't enough holes for exhaled air to escape and my face started to sweat pretty quickly (which kept me from sleeping too).

I went online to research this problem and found lots of reports from others about allergic actions to the plastic tubing. One person suggested on one of the forums covering the cannula and prongs with fabric medical tape, so I got some and decided to try it out.
This photo shows 1 uncovered and the other covered. The ones I have are manufactured by Salter Labs. I have tried to find out the type of plastic used to make them and so far have only been told PVC and "plasticiser" (whatever that means). I know there are many potential polymer compounds, and in order to determine what exactly I'm allergic to I need to know what kind of plastic is in it.

This PubMed article documents this allergy in patients using oxygen cannulas; 

The tape did the trick, although I notice that the sticky stuff eventually bleeds through and makes my nostrils a little sticky.

Apparently there is one company Topah Medical that sells cannulas made of Silicon and claims it is non-allergenic and non-carcinogenic. They're made by a company called Everest

They sell a 4 foot one for $41.00 and a 6 foot one for $45.00. Although pretty pricey compared with standard cannulas they are warranteed for 1 year, and can be boiled once a week without damage in order to sterilize and rid them of bacteria inside and out.

Apparently it doesn't work for everybody but seems not to cause a reaction in most people.

Meanwhile I am in the process of appealing Medicare's decision not to cover Benicar every 4 hours as is used in the Marshall Protocol for Sarcoidosis.

The response Humana (Georgia's default Medicare Part D provider) gave me was as follows;

Your request was denied

We denied coverage or payment under Medicare Part D benefit for the following prescription drugs(s) that you or your prescriber requested: Benicar 40 M TABLET 180/90

Why did we deny your Request?
We denied this request under Medicare Part D because:

Benicar has been prescribed for Sarcoidosis. Although the medication may have been initially denied at the pharmacy due to a quantity limitation requirement, upon clinical review it appears that the requested drug isn't prescribed for a medically accepted indication as stated in Section 1860D-2(e)(1)(B) of the Social Security Act by reference to section 1927(k)(6) of the Act. As noted in section 1927(g)(1)(B)(i) of the Act, this includes FDA-approved uses and off-label indications which are supported by one or more citations in the approved drug compendia (drug reference guides)-Micromedex Drugdex Information System and American Hospital Formulary Service Drug Information. The physician's prescribed use of this medication doesn't meet the criteria and isn't covered.

You have the right to appeal
If you want to appeal, you must request your appeal within 60 calendar days after the date of this notice. We can give you more time if you have a good reason for missing the deadline. You have the right to ask us for a formulary exception if you believe you need a drug that is not on our list of covered drugs (formulary). You have the right to ask us for a coverage rule exception if you believe a rule such as prior authorization or quantity limit should not apply to you.

Note that InHumana is provided the discretionary power to set aside these restrictions and that they chose not to (not only once but twice!) They are well aware that without this medication I will eventually die. Apparently that's perfectly OK with them.

I have now appealed it and been denied two times. Appeal number 3 goes to an arm of Medicare called Maximus Federal Services.

I have written the Secretary of Health and Human Services and am establishing a paper trail to prove the current Medicare regs aren't working for patients and that an amendment needs to be made to put such decisions back into the hands of patients and their doctors.

Both issues; the Medicare process for approval of oxygen and off-label protocols could be made alot more patient-centered if enough people wrote in to HHS, President Obama, and their legislators on the Federal level and insisted on it.

If you would like to give your input/support you can write her and the HHS Committee @

Sylvia M. Burwell
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

In many states DME (Durable Medical Equipment) companies have a competitive bidding process and this also hampers one's access to quality treatment, so if you're writing your legislators about oxygen be sure to ask that they vote to abolish that practice because it places priority on lowest price rather than quality service that is best for the patient. Medicare beneficiaries deserve better!

Representative Bernie Sanders from Vermont who is running for President in 2016 has been a consistently strong advocate for those on Medicare and Medicaid. In addition to Sylvia Burwell I have written him and President Obama regarding these issues.

If you yourself are ill then make your voice heard. If you are healthy then don't wait until you need it to write your representatives in Congress. Do it now so that if you should need one or both of these types of treatment the option will be there when you or somebody you love needs it urgently.

I am willing to take this all the way to the Supreme Court if I have to! Insurance companies are supposed to be there when you need them in such crucial times, not obstruct you from getting the care you need. They were never meant to make medical decisions in place of one's doctor.

Thursday, April 02, 2015

Chronic Disease Strikes Again - Part 2

While waiting for oxygen to be approved by Medicare I am taking the necessary steps to get back on the Marshall Protocol. There have been a few changes to it in the past 10 years I've been away, most notably that the antibiotics are no longer necessary. Trevor Marshall (the originator) has found out that Benicar (Olmesartan Medoxomil) does quite well in addressing the underlying pathogens on its own. (For those who don't know how this works in the treatment of autoimmune disease be sure to read this .

10 years ago when I had to go off the medication the out of pocket cost was $120/month. I checked with local pharmacies; CVS and Walmart and was shocked to discover the price had skyrocketed to around $1400 for a one month's supply at MP dosage (a 40 Mg. pill every 4-6 hours).

Back on the Marshall Protocol study site I found that almost everyone except those with the best insurance coverage were getting theirs from Canada in generic form.

Americans can order a 3 month's supply without raising any eyebrows with customs. I just received the prescription from my doctor today and am getting ready to fax it.

I had to order it on a credit card although it's much less expensive from Canada than it is anywhere in America, so I am doing this on faith that I'll make that money back through sales or whatnot. On my very low income it was a big expense. The generic I'll be getting is made in India.

I just found out my application to Prescription Hope was accepted. This is an organization that will advocate on behalf of the patient to get medication donated from the manufacturer. They charge for the advocacy only and it's  $24.00 a month. for each medication ordered. It still remains to be seen whether the maker of Benicar, Sankyo will release the full dosage I need, as in the past they've only allowed people to have 1 pill a day; the dosage used to treat high blood pressure. If the manufacturer doesn't agree to the full 6 pills a day I may still need to order from Canada when I need the next refill.

I am trying to find a representative to market some of my jewelry to shops in the Southwest to get it moving faster. Etsy alone is just not cutting it. So far I have been unsuccessful at finding one but am still looking.
I'd like to find a good market for the beadwork, especially. Since my medical out of pocket expenses are going up I really need to be bringing in more money on a regular basis.

Recently I purchased Kindle Publishing Pro software to write a book with. I had the first chapter written when I discovered a bunch of files on my computer were corrupted and one was the book. I'm dreading it but will have to reinstall Windows 8 which is a huge job to then put everything back the way it was on my computer, so I may wait a few days to do that. Last night I was on it for 6 hours with tech support to troubleshoot and then back things up that will need to be saved, and I woke up feeling really awful today. It was just too much.

The proceeds of the book (if I can get it to save next time) will help defray some of my medical costs and also maybe help my son with his future medical costs for his condition.

I've made a playlist on Youtube of my favorite songs which I can listen to as I'm working on the computer. Between that and watching comedy I'm processing this as I navigate the weeds of the healthcare bureaucracy. Although there are lots of barriers to overcome I am beginning to see a glint of light at the end of the tunnel.

Chronic Disease Strikes Again

I guess some of my readers have wondered where I am lately. It's been awhile since I've really written in my blog, and alot has been happening.

For those who don't know the background on this; 12 years ago just about every system in my body went haywire and I almost died and was finally diagnosed with Sarcoidosis. I got on a cutting edge off-label protocol called The Marshall Protocol just in time, and was on it and feeling improvement for 2 years when Medicare Part D came along and once my drug coverage was transferred from Medicaid they would not cover the medications. The cost out of pocket was too much on my very small income, and I was unable to qualify for the few medication assistance programs that existed at the time, so I had to go off it.

I tried controlling it by taking it easy, eating a mostly macrobiotic diet and limiting light exposure and for awhile that kept things to a low roar, but gradually my pain level increased and more symptoms started returning. I tried to push it out of my mind. I really didn't want to believe I was having disease progression because I felt I hadn't had a chance yet to really succeed in life and was tired of all this. I just wanted to put it behind me and get on with and enjoy life.

Meanwhile sales had not been good in my Etsy shops and I thought if I could just build up my stamina maybe I could try to do some things to increase my income and hopefully give my business the shot in the arm it needed to really make it profitable.

My plan was to go to physical therapy (hopefully pool exercise and massage), reduce my pain level and then possibly take some part time work to pay off debt and reinvest more capitol in my business so that I could buy some tools like a rolling mill, kiln, and electroforming equipment, and maybe take some more specialty classes to add some new techniques to my arsenal. I've wanted to be able to make my budding vine bracelets in other metals for awhile so that a larger number of people can afford them, as I think that really is one of my signature pieces.

During physical therapy I had a near fainting spell, and began noticing for several weeks that my breathing was difficult and had some motor slowing that would last several hours at a time on and off.

My primary care doctor had suggested I have a Sleep Study too because I was also having sudden episodes of really strong sleepiness. I figured if it was narcolepsy then I could just take a pill for that and move on to my goals. I actually thought that test would be negative, so went into it just wanting to get it over with.

Well I went in and they hooked me up to an EEG and all these other sensors to monitor my breathing and heart rate, etc. I was attended to by a nurse named Gana who was very nice and that night there were just a few other patients, so it was pretty quiet. The TV just so happened to be tuned to a show called Prospectors and they were pulling big honking aquamarine crystals out of the ground. We talked a little bit about jewelry and gemstones before they started monitoring.

An infrared camera filmed from across the room my every movement as I slept (or tried to anyway).

I have sinus problems, so having something sticking up my nostril to sense my breathing was kind of difficult. I don't think I slept very well and kept waking up needing to drink ice water. Even then I thought the test would come out negative and that it was just my sinuses that were irritated and maybe all that stuff hooked up to me that was interrupting my sleep.

Little did I know it went alot deeper than that. About a week or two later I got a phone call from the sleep lab saying they wanted to do another sleep study. I asked why and the woman on the phone told me that they wanted to do a CPAP titration. Mind you I had not even seen the doctor for a full report yet and I was shocked. I told them this and said "Are you sure? I was having lots of sinus inflammation. Couldn't that be it?" A man got on the phone and said I had stopped breathing. Then I spoke with a nurse who confirmed that was correct.

I made the appointment thinking Oh God what a can of worms have I opened up now? I didn't know the half of it; not  yet. I asked the nurse from the doctor's office to send me the full report.

When I went back to the sleep lab they hooked everything up to me except the nose sensors and then the same nurse I'd had the previous time came in to fit a mask on me. The first one was a nasal mask and when it was hooked up to the machine it shot air with such force up my nose I thought my eardrums would burst. It seemed to be hitting an obstruction somewhere in my sinuses. Then I tried another one that was similar and that didn't work either. Then I tried a full face mask. That wasn't as bad since the air was more indirect, but the straps were pushing my head down into my neck and increasing my pain after awhile, so I had to try one with just one strap around the back of my head. That shifted a bit but it was the lesser of several evils. I thought at first that maybe I could tolerate it, but then the minute I started falling asleep it would suck air out of my lungs rather than blowing wringing them out like one of those space bags you see advertised on TV. The air from inside my lungs smelled like some sort of awful athlete's foot fungus.

After a number of hours of this, and twisting and turning to get comfortable I had all I could take of that. The nurse, Gana came in around 5 AM and I told her I was having a problem. The look on her face said it all, although she wasn't allowed to tell me the details. She took off the horrible thing and all the wires and said she was so sorry, that it was hard to watch, and hoped the doctor would find something that would help me. I asked if this happened very often and she said it did to some but was not common.

The next night at home was rough and left me gasping for air numerous times. It was worse than it was in the sleep lab.

A few days later the report came in the mail and it was much worse than I thought. Apparently I had a raging case of central apnea (which differs from obstructive in that it's usually neurologically based if not caused by heart failure). The test did not detect any heart problems, so that left the brain stem etiology. My brain fails to send the signals to my lungs to breathe. I stopped breathing 30 times in each hour of sleep, and I was also breathing too shallowly at other times, resulting in oxygen desaturation. hey documented it while I was awake watching TV as well!. Various symptoms I'd had for years started to all make sense.

I thought back to some neuropsych testing I had at age 6 that suggested that I had some central nervous system dysfunction or damage that was something to do with the regulation of alertness, and thought back to various EEGs I'd had where they found slow waves where they shouldn't be. The headaches, the intense period of complex partial seizures I had for a few years around 1986, and one neurologist had told me something "wasn't hooked up quite right" in my brain. Nobody ever had an answer for these things. All they seemed to be able to do was document it while I struggled alone as best as I could to live a normal life.

An MRI was scheduled which yielded no further clues as to exactly where this is coming from.

Now I find myself at age 54 with a failing respiratory system and I still don't fully know why. Lots of circumstantial evidence is scattered around like shards of glass on the floor but no smoking gun. This elusive thing whatever it is comes and goes like a thief in the night, robbing me of my most basic functions switching them off and on at will. I have possibly lived with it all my life and in order to adapt to this state of being one can never trust tomorrow. It holds all the cards in its hand and I'm just its marionette. I've tried fighting it, ignoring it, reasoning with it, but in the end it has a mind of its own.

I have been unable to eat solid food now for over a week except for a few crackers or a little bread. Sometimes I have little appetite and other times I really miss good food, but when I try to eat a normal meal about 6-8 hours later I get terrible stomach cramps and then diarrhea.

I've had this intermittently for awhile but never was able to find out what it was. Since the CNS controls all automatic functions chances are this is all part of the same thing. Sometimes when I have a central apnea event I wake up feeling like I'm going to crap my pants. This was the first clue that it must be connected. At times it also increases my pain in all the places I usually have it about 100 fold, like a lighting bolt going down all the nerves in my body. luckily those really painful ones have subsided over the past few days.

Breathing during the day is difficult at times. Certain things seem to trigger it such as sitting upright too long or standing too long on my feet, a stuffy room or car, or too much exertion, even intense concentration for too long. It seems as though this is happening around the clock.

When I next saw the pulmonologist he told me that it was the worst results he'd ever seen and that when he checked the literature there hadn't been another case like mine since the early 1900s in which someone had Tuberculosis of the brain. Because of the rarity of it he gave some sort of presentation on my case to other doctors. He went on to say that this is very hard to treat, and acknowledged that CPAP wasn't a viable option since it made me worse. In a nutshell it was clear that my body needed oxygen, so that seemed the obvious solution, even if not a full cure so he put in an order for that but his nurse needs to get Medicare to approve it and that's not easy with their guidelines. They have to find a medical equipment company that accepts my insurance and then Medicare requires them to have me monitor my o2 saturation at home at night. The reason for this is because Medicare has some sort of bias against accepting data from a sleep lab. The standard is saturation must drop to 88% or lower for 5 minutes during sleep . In the sleep lab mine dropped to 81%.

All I can say is this thing better not betray me when we need for it to show itself most! Otherwise I could be sacrificing brain cells and my condition could end up even worse if I don't get oxygen. Having it at nighttime only is still leaving me vulnerable during the day, but it's a start, and once that's established then maybe they'll approve it during the day too. As long as this has probably gone untreated I can't afford to fall through the cracks of the medical system now.

                                                 STAY TUNED FOR PART 2

Monday, March 23, 2015

NeoWorx Seems To Think They Own My Blog - Weird Glitch

I don't know what's going on but all of my content on Google seemed to re-direct to Neoworx with a "for sale" sign on the right-hand corner. No, my blog is not for sale. Not at any price!

I have written Neoworx to tell them they need to remove the redirect, and am looking into how to contact and report this to Google and Blogger.

They responded to tell me that it had something to do with the hit counter by NeoWorx. I deleted it from my layout and so far that seems to have fixed the problem. I just need to check all my other links on Google to make sure everything goes right to my blog now.

I have some interesting content for you readers coming up, so stay tuned :-)

Friday, May 09, 2014

Artisan Watercolor Paper Swatches for Scrapbooking

Pick a card; any card! Tired of the same old cookie cutter mass-produced die cuts and patterns commonly sold for scrapbooking and card-making? These fun rectangular artisan watercolor swatches are bright and colorful, featuring lively abstract designs. No two are exactly alike, and you will never be bored! 

Punch holes in them and use them as tags, punch them with dies and paper punches, or cut them with scissors in your own creative shapes.

I am phasing in a variety of unique parts made from watercolor paper in an array of shapes, sizes, colors, and patterns for the papercraft artist looking for something truly one of a kind to use in one's work!

See these and other unique and hard to find supplies for the discriminating artist/crafter available in my Etsy shop

Sunday, April 20, 2014

What's New At Giftbearer Jewelry and GiftbearerSupply

Happy Easter to all my customers (and soon to be)! today only enter coupon code HOLIDAYUSFREESHIP with your purchase of  $18.00 or more and get free shipping anywhere within the USA! 

While this deal lasts there's no limit on the number of items you can apply it to. Just check out and pay by midnight EST. You do not have to have a Paypal account to pay through paypal with a debit or credit card.

Take this rare opportunity to buy and save for everybody on your gift list for Mother's Day, birthdays, graduations, anniversaries, and other gift-giving occasions.

The above pictured black shark's tooth earrings are my newest; wire-wrapped with 14 Kt. gold wire, and dangle from vermeil chain and ear wires. They have a very black tie look to them while maintaining a distinctly tribal style.

In my supply shop new things are happening as well! Papercraft supplies have been growing in demand on Etsy, so I decided to purchase some die cutting tools and equipment to fill this need.  I'm gradually phasing in some of these paper cut outs;

In addition to these, I've also started adding some iron and anodized aluminum chain in bright colors. Here are a few of the colors I have in stock now;

And last but not least; I experimented with my unique version of rock candy. These took me way to long to feasibly make a profit on, so I'm keeping them for myself, but it was interesting to see what I could do with them;
 Hand-carved sticks in cups of sugar saturated liquid (one row of green and another of yellow). The best formula I could find online said to use about 3 cups of sugar to one cup of water, boiled until thickened. I used up a whole bag of sugar, but overall it was worth it.
 24 hours later some stray crystals began forming in the cups. I pulled them out and let them dry on a plate while more crystals started to attach themselves to the sticks.
 The sticks gathered a thin layer of crystals within the first 24 hours.
This is what I got after about 2 weeks! They are finally big enough to eat. I thought it was interesting that the lighter yellow one had bigger and more cubic crystals growing on it whereas the brighter yellow one had finer and more needle-like crystals. This seemed to have something to do with how concentrated the sugar solution was. Because so many crystals filled up the cups quite rapidly I had to fish out those that were attaching to the cups themselves so as not to get the sticks stuck in a mire of rock hard rock candy and reheat and pour the liquid back into the cups to get the crystals to grow on the sticks! Since the evaporation of the water in the solution resulted in less to cover the sticks each time crystals grew on the sides of the cups I had to add water before melting the hardened sugar back down. This is most likely why I got different results from one stick to another.

I don't have it down to a science yet but it was a fun project. The green ones are not growing near as fast as the yellow, but I have one or two that will look like one of these in a few more days. 

I did find that the remaining solution could be used for more sticks after I remove others, so I am staggering them as long as I have enough usable solution to produce more lollipops.

Wednesday, January 22, 2014

Win A Rainstick Necklace From Giftbearer!

The old adage "Time Is Money" is often true, and if you've ever wanted a Rainstick Necklace but just couldn't come up with the $265.00 in cash or credit to make the purchase here is your chance to obtain one just by putting in some time and ingenuity!

If you pride yourself on your marketing prowess or would just like to challenge yourself and give this a shot then here is how;

Rules For Rainstick Necklace Giveaway

1) Participants (referrers) must first PM me their full name and email address via either Youtube or Etsy.

2) Send buyers to Instruct them to include your full name in buyer's note upon checkout to let me know you were the one who referred them. (I'll be keeping a tally of how much money each referrer brings me).

3) The goal is $2,000. Once this promotion brings in or exceeds $2,000, the one who has brought in the highest total dollar amount through their referrals will win their choice of Rainstick Necklace from those available at that time in my Etsy store. I'll then do another Youtube video and blog post at announcing the winner.

4) To be eligible to win you must be subscribed to my Youtube channel . Make sure your email settings are set to receive all updates so you won't miss it!

5) Winner will be emailed and must provide a reliable mailing address and make selection of chosen Rainstick Necklace from my Etsy shop within 7 days to receive prize.

6) In the event the winner doesn't complete the process required, on the 8th day the next highest dollar amount referrer will be emailed of winning and will have 7 days to do the same.

7) Contest open to US and Canada residents only.

Watch the video here ---> 

To purchase jewelry go to:

Music: "Rattlesnake"
by Greg Reiter

Friday, September 20, 2013

An Untapped Opportunity Comes Through Pinterest

I opened up my email this morning and found this letter from Pinterest.

Just over a year ago, my wife and I welcomed our son into the world. Since his first day, I've been pinning fun things we can do together, right now while he’s still little and later when he gets older. I know many of you do the same. Pinterest is where you keep your wishlists, vacation plans, dream home ideas, and other things you want to do soon and in the future. 

That's why for us, it's so important that Pinterest is a service that will be here to stay. To help make sure it does, we're going to start experimenting with promoting certain pins from a select group of businesses. 

I know some of you may be thinking, "Oh come the banner ads.” But we’re determined to not let that happen. While we haven't figured out all the details, I can say that promoted pins will be: 

* Tasteful—No flashy banners or pop-up ads. 
* Transparent—We’ll always let you know if someone paid for what you see, or where you see it. 
* Relevant—These pins should be about stuff you're actually interested in, like a delicious recipe, or a jacket that's your style. 
* Improved based on your feedback—Keep letting us know what you think, and we'll keep working to make things better. 

For our first test, we'll promote a few pins in search results and category feeds. For example, a pin for a Darth Vader outfit from a costume shop might be promoted in a search for “halloween.” Nobody's paying for anything yet—we want to see how things go and, more than anything, hear what you think. 

Thanks so much for all your support these first few years, and we hope you'll keep pinning with us for many years to come! 

All the best, 

It occurred to me that this could be a wonderful opportunity to give businesses that create handmade items a fighting chance to compete with the big box stores, if implemented so that these promotions favor such businesses. Those who hold the cards in social media sites can make a difference if they believe in handmade and in giving artists and crafters a leg up, and keeping handmade alive and thriving in the larger pond of entrepreneurship. Since many handmade businesses utilize various forms of social media as guerilla marketing on a daily basis, they/we provide a constant stream of material to keep these systems pumping. I figured I'd put my advocacy background to good use and write in to ask that Pinterest consider my proposition. Below is my letter;

Hi Ben,
I like this idea but have one request. Could you prioritize small businesses like mine who are sole proprietorships making handcrafted items? As the economy has gotten tougher those of us in this category have really had to be up around the clock many nights to compete with the big box stores, yet we don’t have near the advertising budget that the big box stores have. I see a lot of commercial mass produced brands also being pinned and often it feels as if I am John Henry competing against the machine.
If you would do this it would go a long way towards leveling the playing field for us “little guys” who make things one by one with our own two hands.
Please write and let me know what you think and if you can make these small handmade businesses a priority in this effort.
Hope to hear from you soon.
Pippit Carlington

If you have a small business producing handmade items, if you have an Etsy or similar online shop, you spend long hours promoting your brand, or you feel that this would help your business and/or that of someone you care about I encourage you to write Ben at Pinterest too and let him know you'd like such businesses to be the focus in this new marketing experiment. At least for the time being it's free and could have great potential to put many artists and crafters struggling to get a solid foothold on the map!