Category Holidays

Make Mine Rare. Or Not

Michael 10 Comments

Today and tomorrow stretch the limits of diseases. Today, as it is every year on the last day of February, is Rare Diseases Day and tomorrow, as does every March 1, begins National Kidney Month one of the most common medical conditions. I am one of the chosen who get to experience both up close and personal.

Rare diseases and kidney diseases share more than just the cusp of the second and third months of the year. What makes a rare disease a rare disease changes a little from country to country. In Europe a disease or condition affecting is considered rare when it affects fewer than 1 in 2,000 people. In the U.S. that consideration is extended to those disorders affecting fewer than 200,000 people in total. Either way, that’s not a lot of people for a disease. There are over 6,000 conditions listed as rare diseases by the National Organization for Rare Diseases (NORD) and Rare Diseases Europe (EURODIS) affecting over 30 million people. Meanwhile, kidney disease affects over 30 million Americans alone. Coincidence? Maybe not.

RDDayIf you go back far enough all diseases have been rare at some time. The more common conditions like diseases of the kidneys didn’t become less rare because they affected more people. They became more common as those treating them spoke with others treating similar conditions comparing symptoms, patient histories, disease progression, and constants in presentation. Often when enough data is collected it becomes apparent the rare disease wasn’t as much rare as unrecognized. Treatment options and the responses then get shared, refined, retried, and publicized and the goal shifts from just education and proper diagnosis of the disease so difficult with the rare ones to effective treatment and some day eradication of the disease.

Obviously a disease becoming “common” doesn’t automatically mean we know enough about it to say were well in the way to effectively treating or possibly eradicating it. If it did we’d need far fewer fun runs every weekend. The National Kidney Foundation may not face the recognition challenge like NORD and EURODIS but treatment improvements are still badly needed and 30 million people can attest that eradication is not just around the corner.

NKmonth

Sometimes, whether rare or common, the patient gets lost in the struggle to recognize or combat the disease. The rare disease sufferer often suffers in silence while it’s “clear” to his and her friends and coworkers that it’s all in his head or she just complains a lot. The End Stage Renal Disease patient “fortunate” enough to be able to still work is made to feel guilty that he might be a little slower on the day after dialysis even though he got a whole half day off for it, or that she never wants to take a real vacation, just a weekend here or there when she can work it around her dialysis days.

If you know one of the 30 million people with a rare disease or one of the 30 million people with kidney disease or maybe one of each or one with both take some time today and tomorrow to learn what they go through, what they need, or how you can help. If you feel generous, a donation to one of the hundreds of organizations looking to educate people on, or advance recognition and treatment of one the diseases affecting your friend can’t hurt.

But if you’re feeling really generous, give a call to your friend and say, “Hi, can I do anything for you today?” That could be the rare treat that really makes a day.

Dance of the Year

Michael 6 Comments

Happy Not Really Presidents Day. Yeah, yeah, I sound like a broken record (under 30s ask a real adult) but there is no such holiday. Never was. Should never will be. I guess the United Kingdom celebrates the Queen’s birthday but does anybody else set aside time for the collective past chief executives whoever they may be. Neither do we. Today is Washington’s Birthday (although it really isn’t, that’s Feb. 22) because he did a bunch of stuff that got this USA started. The other 44 are just hangers on.

If you want a good discount on a car, mattress, or living room furniture, today is your day. If you want to relive my in-depth look at the weirdos who have occupied 1600 Pennsylvania Ave., check out last year’s post. If you want to really celebrate something special, keep reading.

Today is, in addition to a federal holiday, the day after Thon. Thon is the Penn State IFC/Panhellenic Dance Marathon, a year-long fund raising effort to combat childhood cancer. The money raised is donated to Four Diamonds at Penn State Children’s Hospital. How much? Since 1977 THON has raised more than $157 million for Four Diamonds. The Four Diamonds fund offsets the costs of the pediatric cancer care not covered by insurance and provides other services such as specialty care for the mental, emotional, and spiritual needs of the children and their families. Research and medical support are also funded by Four Diamonds.

Maybe today should be a federal holiday because of Thon and other student groups across the country. Surely there are other similarly focused almost adults, but Thon is the poster child for these poster children. The largest student run philanthropic organization in the world, Thon has over 16,500 student volunteers participating in the year-long effort and more than 700 dancers took to the floor for this weekend’s 46 hour marathon.

For years, starting every fall, “canners” would fan out across Pennsylvania and beyond collecting coins at business entrances, sporting and cultural events, and traffic intersections. Mini-Thons, alumni, business partners, and “Friends of Thon” have helped but the physical canvassing raised a huge percentage of the total donations. This year was the first when due to safety concerns, canning was officially banned. Instead crowd funding and THONvelopes replaced the corner canners presence. And still they added to the “over $157 million.”

THON2019They’ve raised over $157 million. How much more? Add another $10,621,683.76 from this weekend. That’s short of the $13.4 million record from 2013, and far far less than say the $700 million donated to St. Jude’s Hospital last year but Thon’s overhead is probably a little less also. And you can’t argue that is still quite a total for a bunch of kids just helping out another bunch of kids.

So if you have a few minutes between mattress shopping and you’d like to justify your day off with something worthy of celebration to celebrate, now you do.

—–

Photo by Patrick Spurlock | Onward State

Acts of Love

Michael 4 Comments

Over the last two or three weeks I’ve seen at least a half dozen TV shows and movies that featured a scene where a parent treated a child to a lunch, a shopping day, or some trip or event that ended with the child asking, “Seriously, why are you being so nice to me? You want my kidney!!!” I mentioned this to my daughter on our way out to lunch. She didn’t comment. Hmmm.

If you don’t know or don’t remember reading it, my daughter is one of those being evaluated as a potential kidney donor for me. She didn’t have to be asked and I treated her to many lunches before my body demonstrated a need for spare parts. Likewise are my sisters going through the evaluation process and I’m not sure I’ve ever treated either to lunch, maybe an occasional birthday brunch or holiday dinner but not a random, middle of the day, full on lunch. Even a friend of my daughter has said he would be willing to go through the process when he found out I was in need. And not one of them was asked.

The story is actually one years in the making. I had been teetering on poor kidney function for a few years. The Wegener’s granulomatosis (GPA) had over a dozen years to work on marginalizing those organs. Drugs and diet had been keeping me functional. Unfortunately function slipped to the unreasonable level and I entered dialysis about 2 years after I had been diagnosed and treated for bladder cancer. The rules at the transplant center called for a 5 year cancer free window before I would even be considered for a transplant.

HeartAndKidney

Image: National Kidney Foundation

Everyone knew the date I had been declared “cancer free” and as the 5 year anniversary approached they seem to take for granted that they would celebrate by scheduling donor evaluation appointments for themselves. No bribing needed.

I think of all this today, Valentine’s Day. This is love. Love isn’t a card, a greeting, or a thought. Love isn’t a saying or a feeling. To truly love someone we must do for one. Love is an action. Love is in doing. Love is in the work.

I love how these people are working for me. I know I’ll never been able to work as hard at loving them.

Happy Valentine’s Day!

Groundhog Day. Again.

Michael 2 Comments

With Groundhog Day approaching I was certain I could count on welcoming an early spring. Gobbler’s Knob in Punxsutawney, Pennsylvania, home of the master prognosticator Punxsutawney Phil, is just a hair over 90 miles from my front door so the weather isn’t much different. I don’t have Phil’s innate forecasting power but I could do a reasonable imitation of him by crawling out of my home and looking for a shadow and we would be working under the same sun. Well, naturally it would be the same sun but you know what I mean.

Anyway … I was certain I could count on Phil not casting a shadow because I am certain he is smart enough to stay inside in weather like this. For the past two days I woke up to -5° temperatures. Not fit weather for man (that would be me) or beast (Phil, of course). Then this morning I heard on the morning weather guess (they like to call it a “forecast” but we know better) this Saturday we will be waking to temperatures in the 30s. That’s above freezing! In fact, if you are to believe the amateur prognosticators, Sunday temperatures might be in the 50s, Monday close to 60, then the back the teens and 20s by Tuesday. This is a week after days that never got out of single digits followed by a couple 60° afternoons then this latest foray into sub-zero land.

freezerI think everybody in the world (except San Diego) can honestly say “if you don’t like the weather just wait a day, it will change!” but this is ridiculous. It’s also not uncommon. Without trying to annoy the climate change crowd or those who feel climate change is a socialist plot, the world is not made for stable weather patterns. It’s a not quite spherical orb spinning at a not quite constant speed on a tilted axis while revolving around a not consistent heat source on a not quite regular ovoid orbit. If you don’t believe me I give you from prehistory the Sahara Forest, from modem tourism the Great Lakes, and from calendar makers’ nightmares throughout time leap year.

But forget the long range consequences of our planet hurtling through space with the surefootedness of a vertiginous ballroom dancer. We feel earth’s uncertainty every day. Every single day sunrise and sunset happen at a different time. And not even consistently. Every. Single. Day. Seasons “officially” change on a different day every year. We can’t even figure out how to divide a year into even proportions. We say there are 12 months in a year but they are of three different lengths. We say there are 52 weeks in a year but then ever year starts on a different day of the week. We say there are 365 days in a year yet there’s that leap year thing going on.

So in the midst of all this terrestrial and celestial turmoil we put our trust in a furry woodland creature to tell us if we should plant the corn early this year. Eh, he has a better track record than the guys getting paid to do it so why not?  But if those hotshot weather forecasters are wrong about Saturday morning and we wake up to -5° again and Phil wants to stay in, let him take the day off. Spring will get here even without him. Eventually. We’ll just not be sure exactly when but then why should this year be any different? It’s already different enough anyway.

 

 

Happy Birthday America!

Michael Leave a comment

Hey, if people can have Christmas in July, I can celebrate the Fourth of July in January. Particularly since it belongs here. Now.

January 14, 1784, the United States of America was established as a sovereign power. It was then the Continental Congress ratified the Treaty of Paris ending the war with Great Britain. Officially today is known as Ratification Day. It’s probably celebrated as little as it is because so few Americans understand the concept of, or quite possibly even the word, ratification. If you’re not sure, don’t look it up in an on line dictionary. There you will find “the act of ratifying.” Useful, no? How about “the action of giving formal consent to a treaty, contract, or agreement, making it officially valid.” Better!

continentalflagWhat happened on July 4, 1776 was like America standing in the middle of the school yard shouting “I am the greatest!” What happened seven and a half years later was everybody else agreeing with them. (Us?) Sort of.

Seven and a half years is a long time for peace to be recognized. That because it wasn’t. Just because the U.S. declared itself independent in 1776 nobody was going to just take their word for it. (Our word?) King George wasn’t convinced and he kept sending troops to North America to convince them. (Us?) It wasn’t until September 1783 that peace was negotiated between the colonies and the crown, officially ending the American Revolution and recognizing the United States of America as an independent country. The treaty was negotiated in Paris and required the ratification of at least nine of thirteen states, a two-thirds majority, when Congress next met in January. Representatives from nine states attended and unanimously approved the treaty, ending the war and constituting the nation.

The proclamation went:

By the United States in Congress assembled, a proclamation: Whereas definitive articles of peace and friendship, between the United States of America and His Britannic Majesty, were concluded and signed at Paris, on the 3rd day of September 1783 … we have thought proper by these presents, to notify the premises to all the good citizens of these United States …
Given under the seal of the United States, witness His Excellency Thomas Mifflin, our president, at Annapolis, this fourteenth day of January, in the year of our Lord one thousand seven hundred and eighty-four.

Wait, wait! Who is this Thomas Mifflin guy and why are they calling him president instead of George Washington. Thomas Mifflin was President of the Continental Congress, just like John Hancock was eight years earlier when Congress was working on that declaration thingy. George wasn’t elected president of the country until some five years later that year when the constitution was ratified calling call for a president of the country to preside over it. (Apologies to on-line dictionaries everywhere.). That’s a post for a different day.

But for today…happy birthday America! Now, who has the cake?

 

 

 

Vieni a festeggiare con la Befana

Michael 3 Comments

Just another couple days and children will be checking to see if they get sweets or coal in their stockings hung by the chimney with care.

Wait. What? Did I miss the last couple weeks? Nope, I’m right on time to prepare for La Befana’s annual visit as she searches for the Christ Child.

The Italian legend of la Befana dates to the eighth century. The story goes the Three Wise Men were on their way to Bethlehem when they stopped to rest at la Befana’s. They told her of their quest and asked if she wanted to join them. She answered that she had much work to do and could not take the time then went back to sweeping her cottage. The next morning she changed her mind but the Magi had already left. Still clutching her broom she packed up sweets for the Christ Child and set out after them. Although the Wise Men ultimately found Jesus in the stable, la Befana was not able to catch up with them and never had the chance to present her gifts. She stopped at every house she passed distributing the gifts she packed hoping one of the children was the baby Jesus of whom the Wise Men spoke.

labefanaLa Befana traditionally is pictured with her broom and a shawl sometimes blackened with soot from cleaning the hearths where she leaves her gifts, sometimes in colorful patches to commemorate the gilded cloths the Wise Men wore. The basket she carries contains sweets and books for the good and coal and garlic for the naughty. She takes up her search every year on January 5, the eve of the Epiphany which then ends the Christmas season.

So if you are also still in your Christmas spirit you can join la Befana in her search this Saturday. Be sure to grab a broom and have some candy and coal ready.

Buona Festa!

 

 

Remembering 2018 – Differently

Michael Leave a comment

This is it. The last day of 2018 is here and everybody who is anybody has published his or her year in review. So who am I to buck tradition?

Last year was, ummm, different. That’s my review in 4 words. Ummm, 5 words? Here’s how I justify that statement. Sort of.

Health: Nope, has nothing to do with kidneys, dialysis, transplants, weird diseases, or even the growing number of states falling for “medical” marijuana. Did anybody else see the first needle-less injection device was developed by a Massachusetts medical device company? Think Dr. McCoy on Star Trek type injections. Hsssss. There, you’re done. Take it from someone who routinely (as in several times a week) gets stuck with needles the size of Bic pen cartridges, this is different, in an exciting way even.

Wealth: Stocks hit record highs this year. Stocks hit record lows this year. Often on consecutive days. Wow! That’s amazing! No, that’s computers doing what they were told to do. When prices fall they are programmed to buy, buy, buy. When prices rise they are programmed to (altogether now) sell, sell, sell. And whether their clients make money or lose money, Duke and Duke get their commissions. (Extra points for identifying that reference.) In the meantime, everybody from Marriott Hotels to Under Armour’s fitness app was breached last year. According to the cyber security company Positive Technologies as reported by USA Today, “When it comes to data breaches, 2018 was neither the best of times nor the worst of times. It was more a sign of the times. Billions of people were affected by data breaches and cyberattacks in 2018 … with losses surpassing tens of millions of dollars.” Billions of people affected and it’s just a “sign of the times.” Oh if only that would be different.

CalendarEndBusiness: Sears is about to become a Jeopardy question. (This former retail giant introduced the Discover Card in 1985.) Sorry. Not news. Sears has been going out of business since the early 1990s. The big business news for 2018 that nobody noticed was that Starbucks opened a store in Jamaica. Jamaica man. In the very shadow of the Blue Mountains. If you are a coffee drinker and you aren’t familiar with Jamaica Blue Mountain Coffee you aren’t a real coffee drinker (or really a coffee drinker) (or really a real coffee drinker). If you aren’t a coffee drinker but your drinking tastes run more to White Russians, you might have experienced Jamaica Blue Mountain Coffee as the main ingredient of Tia Maria liqueur. Yes, Tia Maria in a White Russian, not that Kahlua stuff. Not even Starbucks house blend. That would be too different.

Food: Recalls, recalls, recalls. Lettuce was downright dangerous to eat in 2018. Sorry. That’s not my biggest story. Television ads take an interesting turn during the holiday season. I’ve noted before if you go just by what you see on TV during commercial breaks you’d think people never buy jewelry, wine, or liquor except in December and one week in February. It was a liquor ad that piqued my interest. A high end vodka pushed by a former high end actor proudly noted that it is certified Non-GMO. Excuse me, if you are drinking so much vodka you need to worry if it’s GMOed or not, you need to be drinking something different.

Crime: There were 338 mass shootings in America in 2018. There were 365 days in America in 2018. You do the math. Is it more disturbing there is a website that lists those occurrences or that there is an organization that rebuffs those numbers because the organization that generated the list includes wounded among the victims thus skewing the results? What would be different is if somebody actually did something besides generate new sympathy memes.

Should I take a stab at what 2019 will be like? Personally, I’d like to see something different. Happy New Year. Please.

 

Let There Be More Light

Michael 1 Comment

Taking a break from Christmas, Santa Claus, and all things holiday, I’m talking today about a topic nobody can disprove or even debate … at least in the northern hemisphere. Tomorrow is the first day of winter. Yes it will be getting colder over the next several weeks but it also will be getting lighter! No longer will we have to eat dinner in the dark without a trip to Barcelona. No longer will we have to wake up in the dark unless you live north of Barrow. No longer will the dark hours of the day outnumber the daylight hours unless you live in a cave. The world is still working its way around the sun and we have proof!

WinterSoltice

I don’t know what this means but it looks impressive

The winter solstice happens at 5:23pm on December 21 in my neck of the woods, 3:23 after noon or 15:23 as you prefer in Greenwich. (There probably is a really cool way of calculating down to the very second when it actually occurs at your longitude and latitude and probably an even cooler way of figuring what those are. Feel free to search on your own.) Even Mother Nature is excited about this. She has scheduled the Ursalid meteor shower for Friday night, and at double its usual output even! It’s just like a real celebration with fireworks and everything. And to top it all off, there will be a full moon, the Cold Moon or Long Night Moon in Native American lore, on Friday and Saturday. All great things happening up in the sky.

Ok, if you don’t know already I made some assumptions that are flat out wrong. Sunrise won’t start occurring earlier just yet. It takes about 4 weeks for that to happen. (I don’t know why. I used to work in a hospital, not an observatory. I’m sure those people who understand latitude and longitude can help with that too.) And even outside the caves the days are still shorter than the nights and will be until the Vernal Equinox sometime in March but that’s another post. And those meteors. Eh, you’ll probably not get to see much of them with their peak coming along just before dawn on Saturday when that full moon will be its brightest. And that is assuming you’ll get to see anything including the full moon depending on the cloud cover which is one of those things that makes December famous. Remember White Christmas? Where do you think all that white comes from?

But darn it all, the start of winter is here and that means the start of spring is coming and then there will be summer and the pool will be open and I can go sit on the deck with my ice tea and paperback novel and bask in the sun. And nobody is going to disprove or even debate that one either.

Happy Winter!

Being Glitterati

Michael 2 Comments

The dozen or so Christmas cards I’ve gotten so far are bad for my health. All but one of them is glittery. Glitter. I still shudder at glitter. (You do remember that glitter is even stronger than loofah, don’t you?)

I’m sorry, I just don’t like glitter. I willingly accept it has its places- the inside of a snow globe, the Barbie section at whatever theme park owns her rights (its rights?), strip clubs – and glitter isn’t the only reason I try to avoid those places, but it certainly doesn’t enhance them for me.

What’s become majorly disconcerting is now either due to age (apologies to optimists the world over, but no, it’s not just a number, 7 is just a number), health, or drug to maintain health, it’s not unusual for me to experience a fine tremor in my hands. Do you know what happens to a glitter gilded card when the cover of the card in all its glittery glory is scraped against the inside of the envelope while being withdrawn in a motion usually used with very fine sandpaper?

My usual mail opening spot is at the dining room table and with my newly lost manual stability my dining room table is now the perfect spot for a 21st century disco opening, for very tiny dancers.

Glitter.pngI’m not sure how I became a glitter magnet but I am. I can’t even drive past a Pat Catan’s or Michael’s without the stuff flying off the shelves, out to parking lot, through the car vent, and forever attached to me. It won’t wipe off, rub off, wash off, or as previously noted loofah off. Typically it wears off  8 to 12 weeks after bonding, so as long as I can stay out of glitter’s way on New Year’s Eve and Ground Hog Day I should be glitter free by St. Patrick’s Day and just in time for green glittered shamrock headbands.

The FDA recently issued a glitter alert. Don’t eat non-edible glitter. That’s pretty obvious yet apparently enough people eat non-edible glitter to warrant a warning. And those are people who have choices. I’m sure Hallmark isn’t using edible glitter on its greetings. I’m being glitter dusted across my eating space and not even given a choice!

So if you care for my health, when you slip my card into its envelope please scrape off the glitter. I’ll still recognize you for your sparkling addition to my holiday mood.