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!

Wednesday, September 18, 2013

Let's Put A Stop To Gun Violence Now!

The recent events in Washington DC's naval base have brought into clear focus that the problem of gun violence has not gotten any better over time. One by one as each of the massacres in recent years took place and grabbed the media spotlight they each fizzled when it came down to Congress adjusting laws which would better protect American citizens from such events.

I have not personally experienced gun violence but increasingly find myself feeling uneasy and a little more unsafe as each of these shootings happens.

As I watch the news over the past few days the overall sense of defeatism makes it impossible for me to remain silent any longer. The burning question that comes to mind is "Where is the outrage surrounding this issue? Where are the protests in the Streets?" We have recently seen people get up and organize around the country after the death of Trayvon Martin, a growing presence of activism to increase the minimum wage and to allow unions into large companies like McDonald's and Walmart, but why is it that despite the fact that polls have shown that the majority of citizens agree that new protections need to be instituted surrounding guns, that we are not seeing the kind of energy in the streets to insist that happens?

If Red State Legislators don't want to provide the necessary votes we have to make them with our voices and wear them down until they have no other choice. Those of us who believe something needs to be done about this problem must "be bold" as former Congresswoman Gabby Giffords would say, and just refuse to give up until we get this accomplished!

So today I went to Gabby Giffords' Americans for Responsible Solutions organization and signed onto her pledge and sent my message to Congress to ask that they take the bull by the horns this time and get it done, come hell or high water! This is just one of many small things you as an individual can do. After all you live here too! Why should your voice not be counted?

I thought as an example I'd post the letter here that I sent to Congress through the site;

Dear Congressmen/Congresswomen,

I need you to do the right thing now and pass reasonable safety protections to prevent gun violence as much as is possible.

After yet another rash of recent shootings, this time in DC, there is no reason to hold this up or put it off any longer. Too many people have been irreversibly injured and killed because a minority of people selfishly want to have no restrictions or regulations on their guns.  Although I have not directly experienced such atrocities (yet),  I pray that we can get this fixed so that  neither myself nor people I love ever become a victim of such violence, allowed to spiral out of control.

Sometimes as a member of Congress you have to do what's right even if it's not what's fun, just like you may not  let your 8 year old have a motorcycle and drive it on the expressway even though he might want one.

This problem has been allowed to go too far.

We need background checks now! Not in a few years, not in a few decades! Now!

We need a way to keep track of where legal guns go when they are transferred from one owner to another. We needed this yesterday!

We need to set some limits on what types/quantities of guns and ammo are allowed for civilian use. Even though it might take time to hash out it should have been started a long time ago and that should be well on its way to a viable solution now!

Our country can no longer afford to divert attention away from this central matter concerning these deadly weapons with side-chatter about "video games", "mental health", "evil", or "nanny-state government".

No gun owner who is honest and law abiding has anything to fear of these protections being put into place.

It is a problem that any American is willing to tolerate these violent incidents and become desensitized to them.

It's very simple; safety first! There are wants (guns), and there are needs (life and self-preservation). As adults we have to do the responsible thing and put the needs of members of our society before its wants.

Gabrielle Giffords, one of your own made the ultimate sacrifice when she became a victim of gun violence, and will be sacrificing probably for the rest of her life. This issue chose her, insisting that she address it whether she wanted to or not. If she can do it, so can each of you.

Please start this process now.


Pippit Carlington

If you're wondering what this has to do with you as an artist or entrepreneur; it's that the old adage is so true that "The Personal is Political, and the Political is Personal". Often we don't realize the effect we have on those around us and others' effects on us.

As artists we are in a special position to make the world better than we found it and we can be an active participant in shaping our lives and improving the lives of others. Even if you don't have money to contribute to various causes and can't get out that often each one of us can make a difference in this world we live in through letter-writing, phone calls, through social media, through blogging, and via other avenues we already use in the function of our daily lives and routines.

I found this video that features a beautiful song Overcomer  with a beautiful message.With all the heavy issues facing our nation today, and whatever you're going through as an individual, just keep your eyes on the prize. Once you realize that 9/10ths of the way things are was man-made you come to know that almost anything is possible.

You can keep up with Gabby Giffords in these places as well;
Imstagram: @GabbyGiffords
Twitter: @GabbyGiffords and @ShuttleCDRKelly

You can also contact the organization Mayors Against Illegal Guns comprised of over 1,000 mayors around the country from 46 states who support common sense gun legislation. They had a demonstration here in Atlanta not too long ago. I was not able to get there on that day but I hope to be able to attend another one if they do it again.