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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Old FlagColumbia

Freedom Flag

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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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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.

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L'Chaim Card

Evil? Or Just An Eternal Toddler?

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Everyone wants to be heard; to know that their opinion matters, that THEY matter. But there is a difference between being “heard” (i.e. “understood”) vs. winning people over to agree with your opinion. It’s when people get these two concepts confused that problems arise.

Most of us learn at a very early age that we can’t always get our way, or at least we can’t always get what we want, when we want it or in the exact manner we want it. That’s what the so-called “Terrible Twos” is all about. The reason that you don’t hear about the Terrible Five’s, Ten’s, or Thirty’s, is because the majority of us figure out how to balance our personal needs and desires, with the needs and desires of our parents, siblings, neighbors, countrymen, and the world. It’s that simple but vital skill of Give-and-Take that distinguishes civilization from barbarism. It’s learning to play well with others.

Unfortunately, not everyone successfully learns the lessons necessary to progress past the stage where a toddler suddenly is faced with the fact that they are not the center of the world, and so these Eternal Toddlers [“ET’s”] continue to believe that everyone outside of themselves exists solely to satisfy their needs and desires. When confronted by the reality that they cannot make everyone snap to attention at their every beck and call, the ET ends up feeling constantly thwarted, oppressed, unappreciated, disrespected, and even abandoned. In turn, those feelings lead to intense, never-ending anger at those the ET perceives have come between them and their desires that they ultimately deal with by turning that anger back on others (in the form of adult temper tantrums or worse) and/or on themselves (i.e. self-loathing, severe depression, suicide). This is hardly a satisfying strategy to procure either the respect of others or a realistic sense of self-worth for the ET. As obvious as that equation may seem, ET’s rarely appear capable of recognizing the folly of that mindset or recalibrating their expectations and methods of communication that’s needed to escape the viscious circle they’re trapped in.

It is easy to fall into the trap of judging an ET – especially when you’re caught within the scope of an ET’s rage or continually compelled to witness the dark, disheartening world of an ET who has turned their rage inward. The inclination to yell “Snap out of it”, “Get Real”, “Grow-Up”, or “#!!?@!&!!! You!”, is understandable yet it’s foolish and counter-productive to give into your frustration that way, and can even be putting yourself at risk of great danger. So what can you do when your life crosses with an ET that won’t set you up as their Eternal Victim [“EV”]? The easy answer is to walk away and fuggetaboudit. But that’s not always possible, especially if you have conflicting feelings such as actually liking the person or even loving them, or if you’re stuck with having to deal with them for professional or other reasons. It’s heartbreaking to watch otherwise intelligent, decent people self-destruct and fearsome when an ET has the attitude of “Take No Prisoners”.

Lamentably, we are powerless to make the necessary changes for them. All we can do is try to be patient, to listen, to maintain our self-composure and dignity, to always maintain our self-respect, try to protect ourselves the best that we can, and then pray. Pray for a miracle that forces the ET take stock of themself, gather the strength to face the truth and seek help to turn their life around. Keep reminding yourself you did nothing wrong to deserve the ET’s venom. Forgive the ET, who is undoubtedly hurting even more than you, but don’t forget to take cover. And most important of all, constantly remind yourself that you can survive anything as long as you stick to the truth, never act with malice, and never stop having faith that somehow, somewhere, some time, you’ll finally be free.

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.

Raging

Fury

Mad As Hell

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Pollyanna Lives!

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It’s been so long since I’ve been able to post. So much going on in my head. So much going on in my life. While my body continues to fail me, my efforts to beat the clock have succeeded beyond what I ever dared to hope for, and I’ve somehow managed to continue to grow while dying. (Is that a Dylan song in the making, or what?)

Optimism is an odd but powerful creature and my religion of choice. I’ve been labelled a “Pollyanna” by those who intended it as a derision, but I have always worn that as a badge of honor. To me, the label means that nothing is impossible. Improbable, yeah. But not impossible. Even when I’m overwhelmed, have good reason for feeling sorrowful and afraid, a voice inside nags at me to “just hang on, as this, too, shall pass.“ Without that voice, I would have succumbed long ago. Without that voice, I would not even want to survive. But with that voice, I will always look forward to tomorrow and whatever it may bring.

While I have never really made specific plans for the future, I learned early on the importance of being open to whatever came knocking on my door. It’s taken me in so many directions – wonderful directions – which were well beyond my ability to conceive of beforehand, and led to a rich and enjoyable life filled with interesting and wonderful friends and associates. The only downside (besides my health) has been in trying to keep up with all the plates I’ve got spinning. I have tried to give 100% to everyone and every cause. I know that in my heart, the commitment is there, but have yet to be able to consistently show it. Never enough hours, never enough energy. But as I truly believe that nothing is impossible, I’ll keep on trying and hopefully my friends will continue to understand and put up with my sporadic bursts of activity and periods of quiet.

Free Clip-Art / Icons of the Day: ”Brass Balz” Series, Part 1

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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Brass Balz _ DayPlanner

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Brass Balz _ Notes

WHAT’S NEW ON ZAZZLE

Easter Tiger Lily (card) card
Creepy Friends (3-ring binder)
Easter Bunny in Pink (card) card

Not A Dry Eye In The House

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I am back, but not completely. My 2 week hiatus from blogging was due to an unexpected, emergency trip back to Pennsylvania. The traveling alone wreaked havoc on my health, but the cruel insanity I was subjected to has broken my heart. I am not one who cries very easily, having been brought up to fear being given “something to really cry about”, as my mother would put it. In fact, I recall only coming to tears once in the last 20 years and that was when two of our dearest, life-long friends passed away within just weeks of each other. But over the last 6 days, I have made up for a lifetime of being the stoic one, by bawling my eyes out, being choked up, and feeling a huge pit in my stomach double me over. I am lost as to how to come to peace with what happened and at the same time feel like a complete fool for having expected anything different.

Once again, I know I have been going on about something that I’ve been very vague about, but I am lost for the right words so figure it’s best to stay silent. While I’m still feeling quite sad now, I am so grateful and blessed to have such a wonderful, loving, supportive Hubby and Son, and so many great friends to come home to. I promise y’all that I will get passed this and be back to my usual cheery, optimistic self and will do my darndest to not let you down.

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)

My Broken Heart

Crying 2Crying

Crying 5

Crying 6Crying 4

Crying 3

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The Bronze Killer and Me (+Patriotic Desktop Pix)

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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.

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)

Star Spangled 1600x1200

1280×854 px 1600×1200 px 1920×1200 px

Old FlagColumbia

Freedom Flag

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