RE-BLOG and UPDATE: The Bronze Killer and Me

POST ORIGINALLY PUBLISHED 7/03/2010. I am re-blogging it along with a new section as part of the national campaign for:
HEREDITARY HEMOCHROMATOSIS AWARENESS MONTH

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Still trying to catch up to where I left off before my trip. Too much to do but my body and mind just refuse to cooperate for more than a half-hour at a time. I am truly thankful for the fact that I don’t suffer from the huge mood-swings or periods of sudden rage that often accompanies Hereditary Hemochromatosis, at the same time though, I’m really frustrated by the increasing inability to focus both my mind – and my eyes. It’s like I’ve suddenly developed ADHD at the age of 56 and someone keeps moving my monitor closer than farther away then closer then… Well, you get the idea. HFE is such an odd disease in that it can have so many manifestations and it seems that no two people have the exact same combination of symptoms and the mix changes constantly.

Read More about Hemochromatosis Awareness Month

I’ve got great doctors – but none of them have HFE so they can’t really relate to what I’m going through, and I’ve been searching for other who have HFE to compare notes with. Through those searches, I came across a reference to the book “The Bronze Killer” by Marie Warder and on Amazon.com there were a ton of reviews of the book that were all just raving about how it’s considered the BEST book on the subject of HFE and more specifically, on the experience of the author’s husband and both children having it and how it’s affected all of them. Marie’s husband is like me in that he was not diagnosed until after he had already suffered permanent damage to his liver while her children were fortunately diagnosed before the disease had advanced that far. I ordered the book on Tuesday and received it Thursday. I used to read at least 1 book a day but those days are long gone and so I’m only on page 11. I’ll fill you in as I get farther along.

UPDATED INFO:

The importance of sharing medical records and information with your immediate family members must not be taken lightly or ignored. People rarely feel any significant symptoms of Hereditary Hemochromatosis (HFE) until it’s too late to avoid permanent, life-threatening harm. But unlike an unexpected car crash, broken spine, or burst appendix, the majority of cases of HFE CAN be predicted, tested for, and even prevented IF there is a known family history of a combination of certain risk factors (even where there’s no family history of HFE having been diagnosed). If a patient is found to have any of the genetic defects that can lead to Hereditary Hemochromatosis, from one or both of their parents, and before they have suffered any permanent damage to their organs, there are easy steps to take that can prevent most or possibly all of the debilitating and dangerous effects of the full blown disease and allow that patient to live a “normal” life and have a “normal” life-span.

Most people think that because they personally were never diagnosed with HFE then there is nothing in their medical records that could possible be of help to their family. WRONG! That’s because, despite being the most common of all genetic diseases, HFE is very rarely diagnosed. Before 1996 there wasn’t even a test that could positively identify it! But our medical records contain much more than a list of diagnosis and treatments. Doctors keep notes of symptoms you complain of, what they have tested you for, the raw results of those tests (meaning just the numbers without interpretation), and what the doctor suspected as well as ruled out as the cause of your symptoms. These are the most critical parts of your records because it is not a single number that is too high or too low that would indicate you MIGHT have Hereditary Hemochromatosis – rather it is the combination of which numbers are low, which are high, and which are “normal” – and how consistent those numbers remain or whether they steadily increase or decrease over the years and in combination with what other symptoms and diseases or conditions. So the judgment of which records are needed cannot be made by someone with either a conflict of interest and/or a lack of the specific medical training to understand the interplay of such information.

Yes, we each do have the right of privacy when it comes to our health records – but PLEASE consider the fate of your family: siblings, children, parents, grandchildren, and 1st cousins. Carefully weigh what is really more important: that none of your family ever find out you once had Herpes or an abortion or whatever else may be embarassing or even shameful – OR – that you can actually help save your loved ones lives or atleast allow them to have a better quality of life for a longer time simply by sharing your un-edited medical history?

A good way to start the dialog with your family members on the importance of being open and sharing, the Surgeon General of the United States has launched a public health campaign and has provided tools to help you create a Family Health Portrait. Access the My Family Health Portrait Web tool at https://familyhistory.hhs.gov/.

Now, back to the original blog post:

Completely off-subject but appropos for this weekend when those of us who are blessed to be Citizens of The United States celebrate our Independence Day on the 4th of July, I’ve created a few patriotic icons as well as a Desktop Picture (in 3 different screen sizes) for you. Enjoy!

Free Clip-Art / Icons & Wallpaper of the Day

The following images are either full or reduced size previews. Simply right-click (or control-click) on the preview to save the image(s) of your choice to your desktop. (Unless otherwise noted, downloads are 512px X 512px in .png format). As always, usage of any of the images offered on this blog are free for your personal use while subject to the limitations of my Creative Commons Non-Commercial – Attribution – No Derivatives 3.0 license. (See sidebar for details)

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I DID IT! (Learning To Take Pleasure In Small Accomplishments)

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Yup. I finally completed relocating all of my original clip art, icons & desktop wallpaper to different servers and updated all the affected posts on this blog. Now there will be no interruption in the accessibility of those files AND the loading time for viewing my blog should be much faster. While it was a big and tedious job involving a few hundred files and over a hundred posts, I suppose that my enthusiasm (as denoted by this post’s title) is a bit pathetic considering the fairly trivial nature of this accomplishment in the vast scheme of the universe, but if there is one thing I’ve learned in my life, it is the importance of finding as much pleasure in the little steps and small achievements as I would on reaching my most important goals. None of us can count on being as capable as we are today (to whatever degree that is), much less have any guarantee we’ll even be alive tomorrow. The odds I face are substantially lower than average, so I’ve spent a lot of time over the years (and especially over the last few months) trying to convince myself how important it is to be pleased with what I CAN do and be proud of myself for doing whatever I realistically COULD do towards reaching my ideals. That’s a tall order to ask of one who has always had high expectations and standards for herself.

Being my toughest critic has largely served me well during my first 57 years as it has motivated me to work as hard and as smart as I could to constantly improve my skills and my usefulness to others. While I certainly appreciate the complements and reliance on my ability to deliver bestowed on me by so many others, I’ve never been able to get away from the feeling that I should have done more and done it better (whatever “it” was). By some theories, such perfectionism is a good thing where it spurs one on to grow and become the best they can be as a person and to reach the pinnacle of their abilities. The downside arises when you’re too slow (or fail altogether) to recognize when you’ve already reached the limits of your abilities, whether due to limitations within you or due to external factors outside of your control. The problems such lack of recognition poses includes the inability to enjoy or take pride in whatever you have accomplished, the stress and frustration of continuing to strive for a goal that, through no fault of your own, will always be out of your reach; and the loss of opportunity to ever feel completely at peace that comes from knowing you did your best. I actually didn’t realize I had this problem until very recently because I had always considered myself to have a fairly well-balanced ego; but what happened was a resistance to recognizing that my seemingly infinite ability to find ways to overcome adversity (both internal and external) is in fact, not so limitless.

While I have surprised (pleasantly) my physicians by having beaten the odds of surviving much longer than expected given all the complications of dealing with the lethal combination of multiple serious, life-threatening diseases and conditions, I have hardly come through this all unscathed. I thought that by having a positive attitude and stubbornly telling myself that I “refuse to die” that I could not only cheat death but somehow avoid the physical and emotional suffering that’s associated with those diseases and conditions as well. In the past, that attitude has made a huge and positive difference in my life in overcoming many physical disabilities and tremendous external adversity. For instance, as a result of having served as a “guinea pig” to early experimentation with brainwave biofeedback forty years ago, I learned to be able to control my brain and body to the extent that I could prevent or stop my epileptic seizures from developing past the “aura” stage almost 100% of the time; learned to be able to stop and restart my heart at will; and could self-hypnotize myself deeply enough to undergo surgery to remove lumps in my breasts and even a root canal without any anesthetic. So I had come to expect that there was nothing in the world I couldn’t overcome. But the years of exerting such extreme efforts and the piling on of one disease or condition on top of another over and over again, and the years of being subjected to the intense emotional stress of 12-year long lawsuit with someone I should have been able to trust and turn to for compassion and help, finally took their toll on me over this last year. It wasn’t until that lawsuit reached yet another brick wall in November 2011 that I realized I no longer had the strength or energy to continue my pursuit of justice, that I finally realized that there simply are things outside of my control no matter how hard and earnest my efforts and no matter how reasonable, fair, or “right” my goals may be. Sometimes, a positive attitude just isn’t enough and sometimes the bad guys “win”.

I’d like to still believe that somewhere along the line G-d ensures that justice will be done and no undeserved pain, suffering, or early death will have been in vain, but I am still working on accepting the fact that I will likely never know if such belief is merely the dream of a fool. Part of that effort is learning not to be so hard on myself and to learn to enjoy even the smallest accomplishment all on its’ own and not taking it for granted or judging it as a failure for being still short of my expectations. I am trying my best to be satisfied with myself for having tried, and for doing whatever is the best I can realistically do at any particular time. In one sense, this requires lowering my expectations of myself, and I am trying to learn not to see that as a failure or to feel guilty that I could not do any better. I’ve never applied such stringent standards to my expectations from others and so just need to be able to be as forgiving and supportive towards myself. That’s somewhat of a culture shock and requires “un-learning” a lifetime of beliefs. It is this revelation and struggle that has lead me to look deeper into the lessons I can take from Buddhist, Taoist and Native American philosophies, as they strike me as being the least influenced by the material world and the most in touch with the unvarnished, true nature of man. I’ll be writing more about my progress in posts to come.

Back to the mundane: Here’s the list of the last group of posts that I have updated, followed by a fresh batch of freebies and some of the latest of my designs at IconDoIt – The Store.

MORE UPDATED POSTS

  1. The Constraints of WordPress.com
  2. Deviation to Green Day & Zack
  3. Escher-Sketch Redux
  4. Art Deco: Icons – OR – Clip Art?
  5. Fox Spokane Art Deco Icons, Pt. 2
  6. Mrs. Hudson & Sherlockian Icons
  7. Freedom Rings
  8. CSI – Mac?
  9. The Morale Chorale
  10. Cleveland Indians & Art Deco Icons
  11. Steampunk’d
  12. A Comeuppance & Twitter Birds

Free Clip-Art / Icons of the Day

The following images are either full or reduced size previews. Simply right-click (or control-click) on the preview to save the image(s) of your choice to your desktop. (Unless otherwise noted, downloads are 512px X 512px in .png format). As always, usage of any of the images offered in the “Free Clip-Art / Icons of the Day” section are free for your personal use, subject to the limitations of my Creative Commons Non-Commercial – Attribution – No Derivatives – Share Alike- 3.0 license. (See sidebar for Terms of Use) For commercial or any other use, please contact me for directly.

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WHAT’S NEW ON ZAZZLE

My Wild Irish Rose Card
My Wild Irish Rose
This St. Patrick’s Day card featuring IconDoIt’s original rendering of a richly textured-looking red, red rose against an antique moss-toned wall is really quite special in its’ beauty and message. The real St. Patrick was more about love than drinking green beer so we believe his day is as perfect a time as any to tell her you love her. And since she won’t be expecting a card of this nature on March 17, it will be far more meaningful and just might earn you that magical kiss you’ll never forget!
Truth in Action (iPad Case)
Truth in Action (iPad Case)
For the consumate legal professional, this hard-shell iPad case features IconDoIt’s original artwork of the Scales of Justice with Benjamin Disraeli’s iconic quote: “Justice is Truth in Action” or swap it out for your own logo. And don’t forget to personalize the text!
Themis Spiral Notebook
Themis Spiral Notebook
Great spiral notebook for the law student, lawyer, judge, or for those who love justice and have extraordinarily good taste! 😉 Cover design is an Art Deco inspired original by IconDoIt.

A Completely Blank Mind

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For the last few months I’ve been doing my darndest to avoid thinking – about anything! No, I’m not a Buddhist nor a Native American, but I admire the wisdom of both of those cultures about the nature of humanity and how we can rise above our inherent flaws by first and foremost, releasing ourselves from everything we think we know about the world – about ourselves – about how and why to live – about how and why to die – and about the nature of love, of peace, of wisdom, and of souls. And so, I’ve been trying to teach my brain to simply “Let Go” and think about absolutely nothing. If you’ve never tried this, it is not as easy as it may sound. And it’s even harder if you have spent the last 40 years of your life consciously trying to keep your mind active in order to prevent epileptic seizures! I’d like to share much more about these subjects and my personal experiences with them over the next few blog posts, and hope to start a dialog on these pages with you as I think we can learn a lot from each other. I know that tonight’s (early morning?) post is extremely brief and merely serves as a notice as to what I intend to write about over the next couple of weeks, but I do hope that you will check back here every few days and join (or start) a conversation!

In the meantime, I’d like to pass on to you a link to the latest post, Healing, Harleys & Horticulture of my dear friend, “Dogkisses”. She has a very unique and personal style of writing that draws you in and opens your mind and your heart, even if you come from a completely different background and think you face completely different hurdles.

Oh! I also wanted to let y’all know I just completed updating 4 more of my earlier blog posts tonight, a task that’s been necessary to ensure all the Freebies I’ve posted remain available to you to download. The way I have them set up now, should make my blog pages load a lot faster for you, too! You can check ’em out at the links at the end of this post.

See you in a day or two!

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Free Clip-Art / Icons of the Day

The following images are either full or reduced size previews. Simply right-click (or control-click) on the preview to save the image(s) of your choice to your desktop. (Unless otherwise noted, downloads are 512px X 512px in .png format). As always, usage of any of the images offered in the “Free Clip-Art / Icons of the Day” section are free for your personal use, subject to the limitations of my Creative Commons Non-Commercial – Attribution – No Derivatives – Share Alike- 3.0 license. (See sidebar for Terms of Use) For commercial or any other use, please contact me for directly.

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Surfin'Screenshots

I Love You in Sign Language

When There is No Cure

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Science and medicine have come so far over the last 50 years that it’s easy to presume there is a “cure” for everything, or at least a treatment that’ll ease any pain or other disabling symptoms and extend your life. But that is hardly the reality for millions of folks suffering from either rare or just simply mysterious illnesses that medical researchers have yet to crack. I don’t know what is worse: to find yourself saddled with conditions in the class of those “un-cracked” diseases or to be suffering from diseases and conditions for which treatments (or even cures) ARE available but you can’t take them because you either can’t afford it or because you have other diseases or conditions at the same time that make you ineligible for such treatment. I happen to be in that last category and can honestly say it really sucks! But I also think that there is no good reason for anyone to actually try to weigh “what sucks more” as that would end up invalidating the frustrations and grief experienced by those in whichever group is found to “suck less”. Nothing positive can come out of being subjected to others who try to deny the reality of your situation and who attempt to invalidate your feelings. All it accomplishes is adding to the frustration, stress, and feelings of isolation you already feel.

While those who suffer from any medical condition in any of the above categories can (and should) attempt to educate their family, friends, bosses and coworkers about the reality of their situation (particularly if does or can have a direct impact on those others), too often those “others” don’t WANT to be educated. Usually, such reactions are out of fear for their own health, comfort, or other personal interest. But IMHO, from my personal observations, any benefit gained from sticking one’s head in the sand is doomed to be short-lived and eventually regretted. (Ed. That’s not intended as a threat to anyone, as it is simply the statistical truth based on experience and the laws of probability). Quite candidly, I’ve finally learned to recognize that the consequences suffered by such Ostriches, due to their deliberately maintaining a status of “plausible deniability”, is THEIR problem, not mine. I am no longer willing to waste my time trying to open the eyes of those human ostriches as experience has taught they will only ever see what they want to see. My mission is not to console the regretful naysayers, but to help myself and others who face no viable treatment or cure available to them. My 2012 plan towards achieving that goal via my blog is to research, explore, blog and share different ways to Live (with a capital “L”) even while we’re struggling just to survive.

Free Clip-Art / Icons of the Day

The following images are either full or reduced size previews. Simply right-click (or control-click) on the preview to save the image(s) of your choice to your desktop. (Unless otherwise noted, downloads are 512px X 512px in .png format). As always, usage of any of the images offered in the “Free Clip-Art / Icons of the Day” section are free for your personal use, subject to the limitations of my Creative Commons Non-Commercial – Attribution – No Derivatives – Share Alike- 3.0 license. (See sidebar for Terms of Use) For commercial or any other use, please contact me for directly.

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PJ_Music—-PJ_Textures

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WHAT’S NEW ON ZAZZLE? VALENTINES!

L’Chaim

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“L’Chaim” is Hebrew and is a common toast and greeting meaning “To Life”. That’s a subject I think about every day. Grateful for the gift of life. Trying hard to make mine worthwhile. To make a positive difference in this world that’ll survive me and get passed on to others and to future generations. Trying to glean what I can as to what G-d has in mind for me and what I must do to earn his respect. Trying to learn something new each day and to take notice of everything so I won’t forget. Trying hard not to trip over the hurdles in my life and to not let myself give in to anger or self-pity. Trying to find each day, something to delight in, and something to say “Thank You” for. It’s a full time job for me these days but it carries me through. And I wish for you all, L’Chaim!”. Don’t let it go to waste.

WHAT’S NEW ON ZAZZLE

L'Chaim Card

a.k.a. “Rip Van Winkle”

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Geezus Frog! Is it 2011 already? I seem to have overslept a bit… 🙂

For those of you wondering where the heck I’ve been for the last month or so, or those who were worrying whether I had gotten too big for my britches and abandoned this blog in favor of fame and fortune in the world of commerce: I thank y’all for caring so much, for the many private e-mails, for your patience and forgiveness, and assure you that my feet are still squarely planted on the ground (or at least metaphorically as they are actually at a right angle to the ground and hiding beneath several layers of quilts and blankets).

As the subtitle of this blog declares, the theme here is “The Art of Survival”, and that is what I’ve been doing: Just trying to survive. If you’ve ever been pregnant or observed it from afar, there is an odd phenomenon where a few days before the babe makes his grand entrance, Mom2Be gets a splurge of energy and accomplishes incredible feats of creative and physical effort. It could be anything from chopping enough firewood to keep the kid warm through kindergarten, wallpapering the entire house as well as the neighbor’s, or stripping and finishing an ancient grand piano. Well, my body, for some weird reason, adopts that routine whenever I’m just about to suffer a relapse, and that’s just what happened this time after enjoying a flurry of creative activity from Sept.-Nov. I’m still having a hard time of it and really have no way to predict how often I’ll be able to post but I’m hoping to get back here at least once a week for as long as I can.

In any case, while I’ve been “away”, if I hadn’t known before, I was reminded once again of the riches I’ve been blessed with in friends. Janie, Mi’chele, Art & Enid, Steve & Sue, Barry & Sharon, and Michelle B. too, are each the jewels I shall always cherish. In goodtimes or bad, in silence or song, these are friends who linger long, whether close or far away. What I’ve done to deserve you I have no idea but pray I can live up to your example.

“But friendship is the breathing rose, with sweets in every fold.” Oliver Wendell Holmes

”There is nothing worth the wear of winning, but laughter and the love of friends.” Hillaire Belloc

”Friendship is unnecessary, like philosophy, like art… It has no survival value; rather it is one of those things that give value to survival.“ C. S. Lewis

”If you think that the world means nothing, think again. You might mean the world to someone else.“ Unknown (fun link but I doubt this quote was his)

“One loyal friend is worth ten thousand relatives.” Euripides (408 B.C.)

Free Clip-Art / Icons of the Day

The following images are either full or reduced size previews. Simply right-click (or control-click) on the preview to save the image(s) of your choice to your desktop. (Unless otherwise noted, downloads are 512px X 512px in .png format). As always, usage of any of the images offered on this blog are free for your personal use while subject to the limitations of my Creative Commons Non-Commercial – Attribution – No Derivatives – Share Alike- 3.0 license. (See sidebar for details)

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Therapeutic Bear Hugs

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A couple of days ago, I got together with a friend that I hadn’t seen for over 40 years. While the occasion was a sad one (he had come up to Ohio from his home in Florida for his father’s funeral) it was really wonderful to see him. Of course, when you haven’t seen someone for many years, the first thing is to try to catch up on all that’s happened in each other’s lives. My favorite part is in hearing all about the other person as it gets me out from under my life and I get to imagine what my friend has seen and done and felt. When the focus turned to me (as arriving with a walker or in a wheelchair that the friend wasn’t expecting is bound to do) my tongue seems to trip on my words. After all these years, I still have not figured out how best to respond to the question, “So, what happened to you?”

Not to make light of the pain of those who’ve fallen down a flight of stairs or been in a car wreck, but I wish there was some simple one sentence statement like that I could use to reply to such questions. There are some people who ask “How are you?” that are merely being polite and who really aren’t interested in details. Those are easy. To a friend who really does care, I feel that it’s a matter of respect to tell them the truth. Of course, I also don’t want to come across like a whiner or to depress them or cause them to feel badly for me. And there lies the problem, because the answer to “What Happened to Me” entails a recitation of a long series of illnesses and circumstances that built upon each other over a period of 56 years to land me in the condition I am now. While there is one cause (Hereditary Hemochromatosis “HFE”) that has been at the core of every other major condition or disease or disability that I’ve suffered, most folks have no idea what HFE is but they do know what Epilepsy, Stroke, deafness, Uterine Cancer, Hepatitis C, Non-Alcoholic cirrhosis, Arthritis, Haemolytic Anemia, Osteoporosis, Esophagitis, Peripheral Neuropathy, and chronic pain are. So whether I start with HFE or end with it doesn’t much matter and it doesn’t much matter whether I spend any time at all on the details of any of those conditions and how they’ve affected me or simply just stated their names in a single sentence. The result is still the same. People feel overwhelmed simply hearing that list, can’t imagine how any one person could have endured all that (much less still have a smile on their face) and wonder what kind of hex was put on me while still in the womb. Their reaction is understandable but for some reason I tend to feel a bit embarrassed as I know it has to be difficult to think of “the right thing” to say after someone has answered “What happened to You?” with such a mucked up laundry list.

The best friends I’ve found are those who can hear that list and then go ahead to tell me a joke or can be comfortable laughing at one of mine. People who have such a generous nature as to be sensitive enough to know when to just listen, when to ask for more info, when to laugh with you, when to share with you their own troubles and dreams, and know when you just need a great big bear hug, are priceless. (Thanks, Mark!)

Listen To Simon & Garfunkel’s “Old Friends”

On the menu tonight is a smorgasboard of orphaned icons and clip art that have little in common with each other as far as style or theme but they are easily usable as application icons, avatars, or a variety of scrapbooking or illustration purposes. Enjoy!

Free Clip-Art / Icons of the Day

The following images are either full or reduced size previews. Simply right-click (or control-click) on the preview to save the image(s) of your choice to your desktop. (Unless otherwise noted, downloads are 512px X 512px in .png format). As always, usage of any of the images offered on this blog are free for your personal use while subject to the limitations of my Creative Commons Non-Commercial – Attribution – No Derivatives – Share Alike- 3.0 license. (See sidebar for details)

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My Mammy 2

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The Waiter-Fatchef's hat

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Work In Progress Folder

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