Tag Archives: weggie

Post 1000: Oh dear! I violated Dougy’s space!

I just committed a cardinal sin. I set my laptop down on Dougy’s ottoman!

Out of nowhere, Dougy came running. He hopped up on the ottoman and gave a rigorous scratching to the battle scared fabric.

I got your message, Buster: “The ottoman is off limits to everyone but Dougy!!!”

Hard to believe this sweet little Persian guy, usually so full of good will, this pussycat can be so aggressively, obsessively possessive of the ottoman, yet that’s the way it is on Lane 2. Dougy’s ottoman. No trespassing.

=(^+^)=

For those who don’t follow me elsewhere, I’ve had problems getting on the Internet on my PC this first day back from hospitalization and rehabilitation. Unfortunately, my laptop is of the stupid variety. It isn’t set up to handle graphics chores.

(“Aw…!He just told us there’d be no new Dougy and Andy photos till he works out the technical glitch in his PC!”)

I did want to resume my blog as soon as possible on getting back, however, because I’ve a lot to tell you. First and foremost, as a weggie (a person diagnosed with Wegener’s granulomatosis, not an underwear waistband puller..!), diagnosed in 2003, I know the disease is for a lifetime: There is no cure.

I also know, as a weggie,that it can go into remission as it did in my case in 2005. Some weggies never know a time when their case is in remission. I was lucky and had several years that were active Wegener’s free.

But! But, it always is there, lurking behind the symptoms of other diseases. That is what the doctors at University Hospital (Denver) feel happened to me.

A couple months leading up to the week I became breathless and weak, I had a nondescript malaise, let’s call it, nothing alarming, just “there”. I didn’t feel really bad, yet I wasn’t 100% OK either.

I wasn’t alarmed.

Perhaps I should have  been. The doctors feel an undiagnosed Wegener’s flare wiped out what kidney function the December 2003-May 2005 didn’t manage to do. Now, I will need dialysis three times a week. It doesn’t hurt. It’s just time-consuming: Four hours at a shot! It can be more or less that, depending on catheter function or need.

I tell you this because it is true. I don’t mean to depress you. I mean, this happened to me yet I am basically a happy, positive person. Let me tell you a little story about how I handled the news I was going to have to go on dialysis.

While at the University Hospital (Denver), several teams of doctors visited me each day, including one who’d been among the doctors who visited me daily in 2004. I was known to be a weggie, so the first thing they had to determine was whether my condition was Wegener’s granulomatosis or not.

No evidence of active Wegener’s showed up, but the signs were my kidneys had failed. (Of course, it was no secret to me because I couldn’t urinate!)

One by one, the doctors and interns, in pairs, came to report their findings to me. Each told a bit more of the story, but I knew where it was leading.

Finally, the nephrologist came by. The young doctor with him was quiet. The older doctor seemed uncomfortable or hesitant to give me the bad news.

“I have good news and I have bad news,” he said finally. The good news was it wasn’t Wegener’s I had, and you already know – just as I did! – what the bad news was: I had end term kidney disease. I would require dialysis in practical terms, many life changes in food eaten, and so on.

I sat on my bed in my hospital gown listening to what the doctor said. When he was finished (and clearly relieved I seemed to be taking it well), I said, “Doctor, you don’t have to worry about scaring the pants off of me because [comedic pause] I’m not wearing any.”

I got them both to laugh!

I tell you that story because I don’t want you to feel sorry for me. I’ve had worse news from doctors after all, like when I learned I was a weggie.

My doctor came to my room and explained that my symptoms suggested one of three possibilities. He ticked off why two seemed less likely than the third, then said I most likely had Wegener’s granulomatosis and that I would be dead within two years.

On the third anniversary of the prediction of a two year life expectancy, I reminded my doctor of what he told me. “That sounds like the sort of thing I’d say,” he said. He actually was a very good doctor, one I still admire and respect immensely.

But when it comes to deadeye predictions, there are many factors that affect the outcome: Efficacy of treatment; patient’s attitude; the course of the disease and what stage it was caught at; faith; who knows?

The short of it (said he ironically), I will thrive and survive. I’m pigheaded that way.

It started on YouTube…

My first Internet exposure was on YouTube in April 2009. I had this notion I’d vlog my way to notoriety as a retirement activity that’d keep me off the streets yet encourage some small brain activity…so I didn’t die a slow, stupid death over however much time I had on this side of the divide.

I’ve set aside those early videos, much as I refocused this blog as one about “surviving retirement with two cats”. Cats are much, much more interesting and entertaining than some old fat guy chatting. Let’s be honest here! Yet those old videos pop up when people discover the older videos, recognize some value in them, and attach comments to them.

YouTube re-invented their channel format awhile back, and the new format allows viewers a sample of whichever videos the poster choses to feature. I feature current videos, most viewed videos, and favorites by others on my channel. Before the improvements, a viewer had to dig to find earlier videos people posted or call them up with tags. Most of the “most viewed” videos are early efforts at establishing a presence on YouTube. Apparently, people still find them worth a look.

Here are my five “most viewed” videos plus my favorite Andy video of when he was a very young kitten, upset with me for reasons I never learned:

NUMBER 1 ~

NUMBER 2 ~

NUMBER 3 ~

NUMBER 4 ~

NUMBER 5 ~

And, finally, Andy at two months old:

The Prednisone videos are hard to watch again, though people dealing with the effects of that drug periodically leave comments and questions on these. Doctors take heed: You put people on the drug, but you fail to really, really explain possible side effects, like you can suffer psychosis on the drug or develop diabetes. No small matters!

The Louie videos are fun. [“Lucy” is Louie before I learned how to tell the difference between a female and a neutered male cat. Ha! Seriously!]

GPA?

The name of this blog is based on a nickname for people with the disease used by one Wegener’s Granulomatosis support website: “weggie”. “Weggie” suggests someone living with the disease in any stage rather than a WG patient, someone who never breathes air outside a clinic or hospital.

Those who determine such things as what to call a diseases recently began calling Wegener’s “granulomatosis with polyangiitis (Wegener’s)”, with the added “(Wegener’s)” until everyone gets in line with the new name. “Granulomatosis with polyangiitis” is a bit of a mouthful, yes!? So the generally received way to speak of it is as GPA. Drop the “(Wegener’s)”, or it becomes GPA(W).

I’m a bit confused, so I looked up Wegnener’s granulomatosis to try to better understand why one might rename a disease. Here’s what Wikipedia had to say:

“In 2006, Dr. Alexander Woywodt (Preston, United Kingdom) and Dr. Eric Matteson (Mayo Clinic, USA) investigated Dr. Wegener’s past, and discovered that he was, at least at some point of his career, a follower of the Nazi regime. In addition, their data indicate that Dr. Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr. Wegener worked in close proximity to the genocide machinery in Lodz. Their data raise serious concerns about Dr. Wegener’s professional conduct. They suggest that the eponym be abandoned and propose “ANCA-associated granulomatous vasculitis.”[16] The authors have since campaigned for other medical eponyms to be abandoned, too.[17] In 2011, the American College of Rheumatology (ACR), the American Society of Nephrology (ASN) and the European League Against Rheumatism (EULAR) resolved to change the name to granulomatosis with polyangiitis….”

Wow. Dr. Wegener was a Nazi? Or one of those doctors a little too close to the death machine of the regime, and liking it? Damned if I want to be a “weggie” now! But I am. Till death.

Call the disease “Giuseppe” or “Jack”, it’s still what it is and it does what it does. Though I don’t care to glorify a Nazi doctor in any way, I won’t redefine myself as “guppaboy” or something equally obscure on the off chance that someone hearing I have the disease (WG) might think I somehow honor Nazis or this doctor by speaking his name out loud each time I say what I have.

Doesn’t “GPA” mean Grade Point Average anyway?

So, rather than confuse everyone by changing the name of this blog, it will continue to be “weggieboy’s blog”.

Dr. Wegener, if not his alleged crimes, is dead and buried. The disease continues to have huge impact on those who have it, medically, financially, and emotionally. People still die from it, though new treatments assure more and more of us live reasonably normal lives. (That is “new normal” lives, as in “within the parameters newly defined by the disease, as it stabilizes”.) Few know the disease as “Wegener’s granulomatosis”; fewer know it as “GPA”. The cause and cure for this disease still are unknown, though, thank God, it is treatable with mostly positive if variable results.

I don’t know. In a way, the disease probably should be named after an infamous Nazi doctor. It, too, isn’t very nice.

You can find out more about vascular diseases at this website:

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hiatus

My word! The last time I posted, it was the middle of summer, July 31st! Perhaps the cooler weather will prompt me to return to this blog.

A lot happened in that time, mostly management of my mother’s and my financial and insurance business, something I don’t want to relive.

At this point, I don’t think I have insurance coverage. I’ve become one of those unfortunates who fall under the status “has pre-existing condition”. It’s a big ‘un, too. Wegener’s granulomatosis. Not on the Nebraska Comprehensive Health Insurance Pool list of pre-existing conditions they cover.

Well, there is one form of vascular disease- WG is a vascular disease- on the list, but it relates of arterial issues arising from smoking. Wegener’s granulomatosis isn’t that. Smoking!? And what about these other “pre-existing conditions”? Alcoholism. Attempted suicide. Cancer survivor.

I’m here to tell you, if you are going to have a pre-existing condition in THIS country, the United States of America, it better not be an orphan disease!

“I’m here to tell you…”

That expression crept into my awareness after I first came down with Wegener’s granulomatosis in March or April 2003. Surviving that initial flare, surviving treatment with Cytoxan and Prednisone (the standard treatment for severe cases then and largely now, and known among weggies as the “Toxic cocktail”), that phrase took on new meaning and life.

“I am here to tell you,” I’d say. It wasn’t a given before. I was near death, with lungs and kidneys under assault by my own immune system. “I’m here to tell you,” I’d say. And I meant it!

I. Am. Here. To. Tell. You! I am here to tell you that America’s healthcare system is failing me just now, its insurance side at least, and I hope and pray that my health holds out until the Republican- and insurance company-opposed healthcare reforms phase in or I reach the age where Medicare kicks in, if that will do the trick.

I’m waiting now for a call or an e-mail from BCBS’s local agent to let me know if I am “in” or I am “out”.

If I am “in”, I get to pay too much for less insurance than I had under my company, then COBRA, plans. And be grateful to a healthcare system that values dollars over people, rich people over poor, the advantaged over the disadvantaged, umm… I hear violins!

[“Can Jimmy Stewart return from heaven and play me in the tragic movie I’m playing in my mind. Yes? Oh, good!”]

If I am “out”, I probably will survive. I’ll even set money aside for a rainy day when my body’s auto-immune system runs amok, again, as probability tells me it most likely will before I die of it or its complications.

[I must get to work on that obituary and funeral arrangements. I’m a veteran, so should qualify for a burial by Uncle Sam in the new veteran’s cemetery built on top of an old prairie dog town where I used to watch burrowing owl chicks feed on grasshoppers brought to them by their parents. I’ll like that!]

These will be days of uncertainty, but not days bereft of hope. My faith in God, tempered by this terrible illness, is key to that. That and the fact that God in His infinite wisdom had the good sense to create cats, of which I have one very amusing and companionable specimen, Louie.

I’m here to tell you, that’s Louie in the photo in the super hero suit he’ll wear when he rescues me from this quagmire! Good kitty!

toilet talk

It’s Global Handwashing Day! Well, it was yesterday!

That’s a big deal for an immuno-suppressed person like me or my fellow weggies around the world. Can I state it any more clearly: people who don’t wash their hands after using toilets touch surfaces you can’t imagine, leaving a little bit of- what’s the technical term?- shit on each of those surfaces. Maybe not so much as anyone can see, but enough that anyone touching surfaces the “dirty handers” touched better beware!

How can you be aware of someone who didn’t wash their hands after using the toilet? Unless you observe them directly, you can’t! So…

People with normal immune system might suffer a mild case of diarrhea from transferring “toilet” germs to their mouths (eating without washing their hands). A person with a suppressed immune system, on the other hand, may well develop a more severe form of the same disease. Even an immuno-suppressed person can forget to wash hands before eating a mid-day treat!

If you are around an immuno-suppressed person or are one, they and you know that you can’t count on people taking reasonable, ordinary steps to prevent transfer of disease to others. For that reason alone, immuno-suppressed people get in the habit of what may seem to be compulsive hand washing.

So what? Because reasonable courtesy, your health, and the health of others depends upon all people washing their hands after using the toilet. People who spread colds and flu are another category, but we’ll stick with toilet training for now. Ha!

The videos (above) are ones that Sangye, a weggie friend, posted on the Wegener’s Granulomatosis Support Forum today. If it seems aimed at children, consider the possibility that people of any age who don’t wash their hands after using the toilet may be mental first graders.

I know that writing this, I felt like I was revisiting my first grade orientation. The Superintendent of Schools isolated us boys from the girls and gave what I came to call the Annual Toilet Talk! This blog, I’m sorry to say, duplicates some of the message and a lot of the language of those talks. Wash yer dang hands, blinketydangblastit!

*** Aside from the toilet talk, I want to note that Sangye writes and manages one of the better blogs I am aware of, particularly in matters of national health reform. I highly recommend her blog for its compassion, humor, intelligence, informativeness, even spirituality. Here’s the link:

http://sweetnotalways.blogspot.com/

things are looking up…

I don’t know. After yesterday’s post, I felt a need to create something fun.

There are several places one can get t-shirt designs printed up. I created this t-shirt as a variation of a weggieboy’s blog postage stamp, a mousepad, and the heading of this blog. I guess the design makes it my official weggieboy’s blog t-shirt.

If it brings people to this blog, great! The statistics indicate people actually do come to it, and I hope they are entertained, amused, informed, and find it worth their time.

The symptoms I was concerned about seem to be clearing up, but caution is my word. Once a weggieboy, always a weggieboy.

wedgieboy vs. weggieboy

“What do you mean? Is this another one of your ‘I’ slamming ‘me’ blogs? Wedgieboy vs. weggieboy certainly sounds like it. Explain!”

Thus began another long, long, l-o-n-g, twisted, convoluted, cross-referenced, side-barred, confusing, and confused explanation of something I didn’t really want to know about anyway. Not really. Idle curiosity is all. Friendly chatter.

[No, You missed the subtle difference in spelling. (Subtle for a dyslexic orangutan..!) There are three basic meanings to three or two of the words, if you count. Yeah. See above for several examples of what we’ll call a “Type I wedgieboy. Note how they writhe. Note how they squirm. Note how they call out “Mama” in many languages. Note how they hang, twisting in the wind. Type I wedgies rarely reproduce, unlike their tormentors, who have taken over the world, running most national governments and virtually all major transnational businesses. Yes, Hitler was a wedgieboy, though Stalin most likely was a tormentor.] 

 

Tori the Norwegian Forestkatz or "wegie"

Tori the Norwegian Forestkatz or "wegie"

 

  Whaaaa..!? [Technically, this is a Norwegian forest cat named “Tori”, a “Wegie”, which I include because I like cats. For those not impaired, “Wegie” is pronounced as “WEE-gee”.  It has nothing to do with the wedgieboy vs. weggieboy explanation. Or, if you insist, we can call this one Type IIa. I’m amenable!]

Are we ever going to get to “weggieboy”?? My patience is thinning, and I need to hit the bathroom. [Twit! We are at the Type IIb “weggie”. Not to be confused with those above, it has an “egg” in it, so is pronounced “WEGG-ee”. Wrap your dyslexic orangutan lips around this: WUH + EGG + ee + boi. Say it ten times. Say it until your gums bleed. A weggieboy is someone with the disease Wegener’s granulomatosis, a potentially fatal form of vasculitis. Rather than go through life thinking of himself as a victim, something weak and to be pitied, a weggieboy – or weggiegirl, as they come in both varieties- doesn’t think of himself as a WG patient, but as a weggie, a person who, but virtue of a superior positive attitude, good doctors and nurses, many people in his support groups (work, neighbor, church, community, WG support group), the Drug Duo from Hell (Cytoxan and Prednisone), is a survivor, one of the 9 in 10 people who comes down with Wegener’s granulomatosis and lives. I hope you wet your PANTS!]

Is that a weggieboy?

Is that a weggieboy?


 

[Sorry, bad guess. Below is an example, perhaps not the best example, but the one I have to show.]

Picture 1

[Here’s a video of the real deal, showing the meeting of two actual weggies. I’ve tormented you enough]

You don’t know how unlikely such a meeting is!