Friday, November 28, 2008

Cool new (to me) technology to make shopping easier: ShopWiki.com

From Wikipedia (emphasis added by me):

ShopWiki is an Internet shopping search engine founded in 2005 and launched in early 2006. It was founded by the former DoubleClick CEO Kevin P. Ryan, the former CTO and DoubleClick co-founder Dwight Merriman and Eliot Horowitz. Their primary distinguisher is crawling the internet for stores instead of using data feeds from merchants. In 2006 they received 6.2m in venture funding from Generation Partners. [1]

Kirkpatrick, Marshall. "ShopWiki announces $6.2m in funding." TechCrunch. July 2006.
So ShopWiki crawls the internet for every store out there, regardless of whether the stores have paid ShopWiki to have the exposure or not. (I'm not sure yet who pays for this whole set up or where the profit comes in...) It's like a search engine for shopping possibilities, and I must say my first impression is that it works quite well.

I started out at the ShopWiki Health and Beauty Guide. Wiki Buying Guides are created, edited and moderated by the ShopWiki community, much like the Wikipedia community works. From the Health and Beauty Guide I went to the Organic Health and Beauty products page, 'cause you know I'm all about using as many natural products as possible, for health and safety reasons. Plus I just think natural products are usually nicer all around. I'm pretty sure when we finally figure out what's causing this epidemic of chronic illnesses, it's going to have something to do with environmental pollution, whether the environment is the larger community and world we live in, or if it's our own personal environment of products we wear and/or consume. There is lots of really excellent information on this page, for the beginner or for the more experienced organic health and beauty product user.

Then I got to looking at the ShopWiki Gift Guides, and then at the ShopWiki Holiday Gift Guides. There are really some great ideas there, from traditional to out-of-the-box, from DIY and "buy nothing", to sky diving and name a star gifts.

There are all kinds of ShopWiki Guides; check them out in the Directory of Wiki Guides.

Then I started to get specific. I've been looking for a good source to buy Swivel Lobster Claw Clasps for a jewelry project I've been thinking about for awhile, and the fourth search result down has my best previous price beat by almost 50%. And I've been looking off and on for these things for at least six months now.

Long story short, I have a new Number 1 go-to source for any purchase I plan to make, from here on out.

Thursday, November 27, 2008

What am I grateful for? Photojojo and colors and quilts!

From the 11/25/08 issue of the Photojojo newsletter (my inspiration for this blog post):

"What Are You Grateful For?"

Thursday is Thanksgiving here in the US of A.

It’s our favorite holiday because it involves:

  1. Hanging out with people you like,
  2. eating yourself stupid, and
  3. falling asleep on the couch in the middle of the afternoon.

Some friends of ours host Thanksgiving for all their pals who aren’t going home for the holiday. When they sit down to eat, instead of saying grace, everyone at the table says one thing they’re thankful for.

Now that’s a tradition we can get behind. We don’t usually think about the things we’re grateful for, but today’s a good day to start.

This week, take some pictures of the things that make you thankful, whether it’s the big stuff:

  • your friends
  • your spark of creativity
  • being able to see well enough take photos

or the little stuff:

  • warm socks on a cold night
  • the first cup of coffee in the morning
  • that album that always makes you feel better when you’re in a bad mood

The next time somebody tells you to count your blessings, just whip out your photos and say, “I’m way ahead of you, buddy.”

What Are You Grateful For?
Post your photos of the things that make you glad.

The 52 Blessings Project
Take a photo each week of something you’re grateful for.

Besides Photojojo, I'm grateful for colors and textile arts. As in quilts. And for the quilters. So far I'm just an appreciator of quilts. Someday maybe I'll be well enough to quilt, at least by machine. Today I'm making that a Wellness Goal. (I've found this is a good thing to do, setting Wellness Goals. This way I can see how far I've come. After I had outpatient laparoscopic surgery to remove the endometrioma on my left ovary, my goal was to be able to sit through a movie in a theater. It was years, but I can do it now without much thinking about it.)

Anyway, here are some of my Thanksgiving-ish favorites.

"Giving Thanks" by Kristin Miller of the Patchwork and Art Quilts blog.

It's difficult to capture the texture of a quilt in a photograph, but I think this Amish Country Quilts site does it best. Here's a sample of how they do it:

And I just love this picture from Sew Create It blog by Jane Weston, of a machine quilt in the making.

This excerpt from "The Quilters" by Patricia J. Cooper (Author), and Norma Bradley Allen (Author) always makes me thankful for just what I've got:
Sometimes you don't have no control over the way things go.

Hail ruins the crops, or fire burns you out.

And then you're just given so much to work with in a

life and you have to do the best you can with what you got.

That's what piecing is. The materials passed on to you or is all you can afford to buy...

Your fate. But the way you put them together is your business.

You can put them in any order you like.

By Mary White as told to the authors of "The Quilters: Women and Domestic Art: An Oral History, page 20

Friday, November 21, 2008

Almost the last stop on the Bloggers' Book Tour for "Women, Work and Autoimmune Disease-Keep Working Girlfriend!" (KWG): A very personal review

Rosalind Joffe
Read about the book's authors, Rosalind and Joan, here.

Check out all of the Book Tour participants here.
Joan Friedlander
And all of the Book Tour stops are listed here:
11/3-11/12, 11/11-11/14, and 11/17-11/23.

The book is great. It's short, easy to read and packed with information such as: Pacing yourself, searching for a job, keeping a job, disclosure on the job, negotiating with your employer for accommodations, and being self-employed. And it's written from the best, most real perspective possible: That of two women who know from firsthand experience what it's like to live and work with CI.

I could have used this book about twenty years ago when I was diagnosed with my first ICIs: Fibromyalgia and Endometriosis. I mean, I REALLY could have used it. I'd go so far as to say that I might still be employed now if I'd had this book back then, and used it.

The book starts with a chapter in which autoimmune disease is defined. I looked into the subject a bit more from other sources, and there seems to be some disagreement as to whether Fibromyalgia is an autoimmune disease (AD)... and it seems to me that endometriosis should really be included on the list, but it's not. That said, on with the review!

Reading this book made me think a lot about my most recent job. Rosalind is also a career coach for professional people living with CI (appropriately, cicoach.com). I called her in to help me in 2006 when I started having problems doing my job as a Program Assistant for the local Department of Juvenile Justice office. The cause of the problem was the fact that I was suddenly asked (turned out it was actually an order, not a request) to take on the task of acting as receptionist for the local Department of Family and Children Services office for two hours every day, in addition to all of my duties as PA for DJJ. Long story short, both offices were housed in the same building and I knew how to run the front desk of the busy DFCS office from past experience. The additional responsibility took me out of my quiet office with one phone line (and a window!), and put me behind a large piece of bullet-proof Plexiglas greeting and prioritizing the needs of everyone who walked in the front door of the busy public agency, and coordinating four direct phone lines with thirty five or so case workers' lines transferring to the front desk if the worker didn't answer. As I said in a written communication to my boss:
The reason the DFCS receptionist position type of work is so hard for me is that it triggers the FM symptoms of IBS. Specifically, the constant distractions are the problem: Four phone lines all ringing at the same time, clients continuously at the window, appointments and documents to be logged on the computer, etc. There is not any one specific task that causes problems for me with this job; it’s the multitude of things; the whole of the job taken together.
Call it central nervous system sensitization, hypersensitivity, whatever. That job did it to me and the result, within a couple of months, was not pretty. I'm going to say here what I never actually said to my employer (and should have) because it's a hard (embarrassing) thing to get specific about. Rosalind has described it in the most delicate way I've heard: streaming diarrhea. I mean, I eventually had to stay home for a week wearing a sanitary pad constantly because I wasn't able to make it to the toilet "cleanly." That's no way to be out in public. It's just not sanitary.

I told the powers that were that I was not able to do the DFCS receptionist job and gave them general reasons why not. From there it got really complicated and that would be a whole different blog post. The point is that I waited until too late to start working with Rosalind; when you're making the kind of money I was making, it was hard to justify even her very reasonable rates. This book would have really helped me in that situation.

From the comments to the question about disclosure that Rosalind answered on How to Cope with Pain:
"What is unfortunate, but true of many with chronic illness, is that we do wait to long to disclose and by then the situation may not be able to be fixed."
I learned from this experience what I already knew, that these symptoms can come on suddenly and get really bad really fast; what I learned that's new is that I need to take action immediately to disclose and find accommodations that work. It's a difficult situation and the fact is that sometimes accommodation is impossible. I was told that I needed to continue doing the same jobs in the same way for a few more months, until we could get situated in a new office independent of the DFCS agency. I've you've ever lived with the severe symptoms of IBS, you know that a few months can put you in the hospital. Long story short, I chose not to go there. I didn't and still don't understand why I have to put my health in severe enough jeopardy to be hospitalized before I am taken seriously.

This book also reminds me of the difficulties I had in the years leading up to my last job; of the constant struggle to get through each and every day; of how it was never possible to take enough time off to feel well and rested again; of how I became "more vulnerable to a loss spiral, in which losses proliferate(d) and escalate(d) over time." [page 30] It also shows a path I could have taken, if only I had known how: A path of choosing to believe in the possibility of being able to attend functions or perform activities and learning to live with the letdown of sometimes having to cancel or back out, instead of choosing to limit myself to only the essential activities of my work and home life because of the fear of not being able to follow through on my commitments.
"If you don't plan for what's possible, you're leaving it up to chance - and that creates a victim mentality." [page 49]
This passage was also very meaningful to me:
"I reinvented myself time and again, only to discover that I couldn't do what I thought I could because of ever changing limitations." [page 50]
Recently I decided to use my profile on LinkedIn to see how many jobs I've actually had. I went back 25 years, and it doesn't even include the temp jobs that I had in between "real" jobs. I used to thrive on change, and be a multi-tasking fool all day long. In my early 40's when my career should have continued to progress, instead it started to decline. When what should have been a minor surgery to remove an endometrioma by laparoscope became a major setback, my career path took a nose dive. And I've been here, bottomed out, for a couple of years now.

I don't tell you these things to cry in my spilled milk, but to use myself as an example with the hope that you will use the tools that are available nowadays to make better choices than I have so far. One other tool Rosalind has made available to us is the "Keep Working With CI Workbook," which includes what we need to put the ideas from KWG into action. And she's running a special promotion in honor of the release of the new book that includes lots of extra goodies with the workbook, at a wonderful price.

KWG ends with a chapter on the Warrior Spirit. I love the image that idea projects to me. My Warrior Spirit rides a white horse and in spite of everything, I feel she's still within me. We will ride again!

I think when the Book Tour is all said and done, I'm going to do another post with some of my favorite quotes from other stops on the tour. So be watching for that next week.

Thursday, November 20, 2008

The Twilight Saga books, and the first movie: Not just for teen girls!

Reading (and listening to audio books) has been my salvation during these extreme chronic illness years. During my last flu bout I ripped through the entire Twilight Saga:

And now I'm a confirmed "Twilighter."

The first Twilight Saga movie comes out tomorrow. Movies are also a great distraction from pain etc. You wouldn't know it from what's on TV, but there are about a gajillion good movies out there. We have a Roku box, and it's the bomb.

Check out the movie trailer. Way cool.

Judging by this music video, the movie might have a pretty good sound track... it's #1 in the USA on Billboard this week.

EW's Twilight Central has tons of good stuff.

TWILIGHT'S CAST (From left) Rachelle Lefevre (who plays Victoria), Kristen Stewart (Bella), Robert Pattinson (Edward), Cam Gigandet (James), and Taylor Lautner (Jacob)


Jacob is my favorite from the books. Yay Team Jacob!

Top Ten Reasons Why Jacob Would Make a Better Boyfriend Than Edward (contains spoilers)

Sunday, November 16, 2008

"Her Only Child" - Why does the nut-job character in this Lifetime Movie Network movie have to have with Fibromyalgia???

Like we don't already have enough stigma to deal with, movie people have to give their wackiest characters Fibromyalgia, and make them hypochondriacs too?

Here I am flipping through Sunday afternoon movies and this one on LMN called "Her Only Child" caught me because the daughter was saying if her mother wasn't complaining about her Fibromyalgia then it was her thyroid and if it wasn't that it was something else, and the daughter wondered how much of it was even real... sound familiar?

This movie is called "Maternal Obsession" on the producer's website. Oh yeah, the maniacal looking woman with the gun is the one with FM.

LILY (Nicholle Tom), 31, is an average woman with an average life. She's pretty, friendly, and does well at her job as a claims analyst for an insurance company. But there's one facet of Lily's life that just isn't normal-- her mother. A couple years ago, Lily moved back in with her mother INEZ (Gwynyth Walsh), 60, to help take care of her when she was sick. Now that she's there, Inez is not about to let her leave. Lonely and bitter after her own husband left her years ago, Inez feels that Lily is the only person she has left in the world and has tangled such a web of guilt and lies around Lily, the young woman is scared to leave. Inez does everything she can even going to extremes to sabotage any relationship Lily tries to have especially with men. Unfortunately for Inez, Lily begins dating a guy at work, LARRY (Cameron Daddo), 40, who is seemingly perfect for her. Fearing her daughter will soon leave to 'have her own life,' Inez realizes she must pull out the big guns to make sure Lily and Larry never end up together.
OK, it's just another hokey Lifetime movie and I wouldn't even have watched it if FM hadn't been mentioned, but geez it's just so frustrating sometimes!

Saturday, November 15, 2008

Alleluia! California Chiropractic Board moving to revoke Paul Whitcomb's license

San Francisco/Oakland/San Jose ABC channel 7, KGO-TV/DT broke the story Friday 11/14 at 7:10 pm:

Chiropractor claims to cure fibromyalgia - ABC news video

Investigating Fibromyalgia "Cure" - ABC7 News blog post

The actual complaint against Whitcomb from the California Board of Chiropractic Examiners and the Attorney General’s office

I'm absolutely positive that this is the result of all of the courageous people who came forward to tell the truth about their experiences at Whitcomb's clinic. Congratulations to all of you, and I'm just sorry this couldn't have happened before you were enticed to try Whitcomb's "Method."

Friday, November 14, 2008

Mel Borins' Ode to Hashimoto's Thyroiditis

I'm feeling dumpy
My neck is lumpy
I'm eating nothing and
I'm gaining weight...
My voice is hoarse
My skin is coarse
I'm tired of kelp
And I want some help!

I've got Hashimoto's thyroiditis
I've got hypothyroid disease
I've got Hashimoto's thyroiditis
Doctor, doctor, help me please!!!

I won't spoil the rest of the lyrics for you - very cool song. We CAN find humor in the most unlikely places if we try! Take a listen, here.

Family physician and holistic stress management expert Dr. Mel Borins of Canada (pictured here setting up the infirmary of an overnight summer camp with the camp nurse) wrote and performs the Ode to Hashimoto's Thyroiditis, with music by Mitch Girio.
Dr. Borins' friend and colleague, endocrinologist Dr. David Feinstein of Dallas, Texas, arranged for his website to feature Dr. Borins's hilarious homage to hypothyroidism.

Tuesday, November 11, 2008

Barak Obama wants to know our stories, our hopes and concerns; get a free commemorative sticker too!

From Change.gov:
An American Moment

The story of the campaign and this historic moment has been your story. It is about the great things we can do when we come together around a common purpose. The story of bringing this country together as a healed and united nation will be led by President-Elect Obama, but written by you. The millions of you who built this campaign from the ground up, and echoed your call for the change you wanted to see implemented by the Obama Administration - this process of setting up that new government is about you.

This transition is about selecting a new staff and agenda that will help reclaim the American dream and bring about positive lasting change to this country. In order to do that, we want to hear from you.

Tell us your story and the issues that matter most to you. Share with us your concerns and hopes – the policies you want to see carried out in the next four years.

"I ask you to believe - not just in my ability to bring about change, but in yours. I know this change is possible…because in this campaign, I have had the privilege to witness what is best in America. I've seen it in lines of voters that stretched around schools and churches; in the young people who cast their ballot for the first time, and those not so young folks who got involved again after a very long time. I've seen it in the workers who would rather cut back their hours than see their friends lose their jobs; in the neighbors who take a stranger in when the floodwaters rise; in the soldiers who re-enlist after losing a limb. I've seen it in the faces of the men and women I've met at countless rallies and town halls across the country, men and women who speak of their struggles but also of their hopes and dreams."

So what do you say? Let's tell him about our struggles, about the issues that matter most to us, and even let our minds run free to envision what could be, to tell him of our hopes and dreams and of the policies we want to see carried out in the next four years. Policies for a nation that takes care of it's sick and infirm instead of allowing them to wither and die, and maybe even for a nation that goes so far as to PREVENT illness and infirmity whenever possible. Couldn't hurt. Might help. If you feel like sharing please feel free to send a copy of what you've written to sherril@theiciexperience.org. I'll even post it on The ICIE if you want to give me permission to do so.

Want a free Obama sticker (shown above) to celebrate the victory? It's designed by Shepard Fairey, the artist who created the iconic HOPE poster. And MoveOn's giving them away totally free--even the shipping's free.

Click this link to get your free Obama sticker.

You can also get the commemorative poster for a $20 donation, here.

Monday, November 10, 2008

World Diabetes Day and my second appointment at the FFC, Part 1

Great Scott! Charlie Brown, not diabetes too!!!???***###


No, but I might have PRE-diabetes. Dr. Cuddapah at the FFC has prescribed a half-dosage of Metformin for me because my triglycerides are high, my HDL is at the lowest of the acceptable range, I'm overweight and I'm old(er). After doing my follow-up research I see that no one recommends medication on the POSSIBILITY of pre-diabetes. You have to take one of two tests to get a glucose level before you can be properly diagnosed. And of course the medication has it's own side effects which I would just as soon avoid... so I'm going to ask the doc about getting properly diagnosed before starting meds and if I'm not actually pre-diabetic I'll suggest using diet and exercise to control the situation for now. Of course my first course of specially-formulated-for-me Metformin has already been ordered from the FFC's compounding pharmacy, and paid for. Ugh. Why is everything so difficult? Or as two members of my family would ask: Why do I have to be so difficult, why can't I just do what my doctor says like some mindless automaton?

This article gives a nice summary of the situation: Too Few Americans Aware of 'Pre-Diabetes'.

If you are so inspired, please sign the petition to ask Google to light a blue Doodle on World Diabetes Day, November 14 -

Sunday, November 2, 2008

Part 2 of First Appointment at the Fibro and Fatigue Center

Here's my complete receipt from the FFC. Click on the individual page to see it full size.

Page 1 of the receipt shows tests I was given and their costs, and my diagnoses.

Page 2 details the "Intraveneous Infusion." I'm going to ask more about this IV drip at my next appointment. I think it might have helped me to feel better but I was totally wiped out for the rest of the day of the infusion. The majority of the cost of the drip is for the administration of the infusion. Huh. Must have been to cover the private room they set Mom and I up in - she got her own recliner. She liked that. She read for awhile then took a nap. I sat in my recliner for two hours trying to hold my arm in the right position for the drip to keep on drippin'. I'm supposed to be having these infusions weekly, but it's not possible since I live so far away. I will ask if a local doctor's office could administer this IF I decide that it's really helping. And next time I will have them set it up on my right arm in spite of the fact that I'm right handed. The neck/shoulder problems I have on my left side as a result of cervical degenerative disk disease and bulging cervical disks were severely aggravated by the whole process.

Page 3 shows all the supplements I was given and their prices. ( The complete description of each is included in the Patient Customized Instructions, which follows the receipt.)

Page 4 shows the "Energy Injection" (I have no idea if this helped or not - I think I'm supposed to be having one of these each week also...) and the grand total for the first appointment. You can finance it interest free for up to a year through Care Credit. Yes, it is VERY expensive. The appointment was $390 in and of itself, and they make you pay for it when it's scheduled. In my case that was a month before the actual appointment. More about these costs in future posts. For now I'm just laying it out there.

The following are the "Patient Customized Instructions" that they gave me at the FFC. Pages 1-3 contain more details on the supplements I was given.

Pages 3-4 contain more details on the IV and Energy Injection.

Pages 4-5 contain instructions for an (anti-) Yeast Diet which seems quite impossible to me right now. WHAT ELSE IS THERE TO EAT??? Woman cannot exist on vegetables alone.
Pages 5-7 contain descriptions of the diagnoses of CFIDS and FM.

Page 7 also has a description of Herxheimer. The doctor didn't talk to me about this at all. He did give me a prescription for Nystatin, solely on the basis of my answers to the Candida Questionnaire included in my original 25-page application, that I haven't had filled yet. Nystatin is an anti-fungal, which is a cause of the "believed to be" Herxheimer reaction. I haven't filled the prescription yet because I've been treated with anti-fungals before, with no perceived results. I'm not sure I want to go there, especially given that my current treatment philosophy is based on using evidence-based medicine. There is no evidence that this medicine does what it's supposed to do, or even that over abundance of candida causes the problems it's said to cause. For that matter, there's not even any evidence yet that I have an overabundance of candida. Where's the proof? Included in my blood work is a Candida IgG IgM IgA test. Here's an overview of the test. I'll see what these test results show, and ask the doc what they mean. And I'll also ask where I can find some scientific documentation of the whole schmear. I've looked and searched and can't find anything. I would think that 20+ years after the introduction of the concept of the Yeast Connection, that by now we would have some scientific documentation available of it's existence and treatment. This is the best that I could come up with: A randomized, double-blind trial of nystatin therapy for the candidiasis hypersensitivity syndrome. And these were the Conclusions of this study:
"In women with presumed candidiasis hypersensitivity syndrome, nystatin does not reduce systemic or psychological symptoms significantly more than placebo. Consequently, the empirical recommendation of long-term nystatin therapy for such women appears to be unwarranted."
And last but not least on cancida/yeast (for now), my ol' buddy The QuackWatch M.D., Dr. Stephen Barrett, doesn't think much of the whole Yeast Connection concept either: Dubious "Yeast Allergies".

Also on page 7-8 is a description of the Fibromyalgia and Fatigue Patient Handbook that I was given. More on this later.

Here's a list of the handouts I was given at my first appointment:
3-Month Yeast Elimination Diet (AGAIN)

Standard Blood Tests Miss the Majority of Hypothyroid Patients

Jarisch-Herxheimer Reactions - Many Patients Ask: "Why do I feel worse after starting treatment for my infection?"

list of Pain Options

list of Sleep Options

list of Energy Options

Hormones and Their Actions

Hypercoagualable State and the Relationship in FM, CFIDS and Unrelenting Fatigue Patients
Dr. Cuddapah also gave me these two handouts (19 pages) on Hormone Replacement Therapy (HRT) and instructed me to read and know their contents by my next appointment:
FDA Approved "HRT" is Risky, by Jonathan Wright

Natural (Bio-Identical) vs. Synthetic HRT
No other explanation was offered as to why I was being given these handouts, and I was apparently too overwhelmed at the time to question WHY.

It's no wonder I was overhwhelmed, eh?

My next appointment is on Tuesday 11/4. Election Day. I'll get my test results then.


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