Sorry to say, one of my weggie friends, Phil Berggren, just died after many years battling Wegener’s granulomatosis/GPA. I’ve known him for five years, and made his acquaintance through Australian Andrew MacLean’s excellent support website, Wegener’s Granulomatosis Disease Support Forum, on which he was very active.
Phil was a survivor, with a strong will to live, a strong interest in knowing everything he could about this disease that just took his life. His body, in the end, was weakened by the disease, and even his strong will was unable to heal his lungs, his body.
He willingly shared his knowledge, often from hard-earned experience, with other weggies and members of their families, something that comes up in many of the comments posted on Facebook, where I learned he’d just died.
Knowledge is power when it comes to quieting the fears of a weggie. Or of helping a weggie to accept sometimes grim news about his or her prospects. I hope his knowledge helped him as much as his faith did when the end approached. He was a good person.
Phil, God bless, my prayers are for you, your family, your friend Alysia, and everyone who mourns your passing. We will miss you. You made a big impact in a too-short life, and inspired many people who needed a boost to the spirit when their doctors presented them more bad news about this disease we share with you.
I’ll return to posting things about my kitties tomorrow, but today is a day to honor the memory of Phil Berggren. His phone number’s on my cellphone, you know. Today, I wish I could call him in Heaven to say “Thanks! You inspired me, you answered questions I had, and you made a difference in my life in ways I never told you.”
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As a weggie – one of those people fated to live with Wegener’s granulomatosis (AKA GPA) for the rest of my life – I’ve had well-meaning people try to offer strategies and advice on how to deal with chronic illness. Yesterday, I came across this item posted on Facebook by a fellow weggie, Anne Wellings.
Spoon theory is something new to me. I understand it on some organic level, having experienced an illness that sometimes left me exhausted but not visibly sick, of being at an age where everyone else in my cohort can name an ache or pain for every one I experience, though theirs more likely than not aren’t signs of a body rejecting itself…. The “Chronic Illness BINGO” chart below covers a lot of the things others either said to me or implied in their effort to “deal” with my illness.
My all-time favorite, though, was by a co-worker, who sold organic vitamins for extra money. (“One-A-Day vitamins don’t break down in your system, so you just poop them out whole” is a paraphrase of one line she used.) Shortly after I returned to work in March 2004, after three months off for the fight of my life, for my life, then a few weeks to build up my strength, she told me I should stop taking the medications my doctor prescribed because they were poison, which is technically true of medicines — and, well, vitamins! Instead, I should take such-and-such vitamins because she, vitamin seller, read a study that characterized natural vitamins of the specific sort she sold as a panacea…for everything, including this disease I had that she’d never heard about before I came down with it.
I told her I could take her vitamins, a therapy not recognized by any credible WG specialists and die or continue with the “poison” prescribed by my doctor and live. Was she willing to take responsibility if I died on her vitamins? It shut her up.
She also tried to convince another co-worker with MS of the efficacy of her vitamins. The person with MS told her off, too.
Though I am in remission, and have been since May 2005, I remember well-meaning people trying to help me deal with something they couldn’t possibly grasp, a rare illness that has no cure, and, that used to be a sure death sentence. My own doctor, when he identified my illness and told me what I had, said I had Wegener’s granulomatosis, and would be dead within two years.
That was in December 2003. In December 2006, on the third anniversary of the “dead in two years” prognosis, I reminded him about what he said that cold day in 2003. “That’s the blunt kind of thing I’d say,” he said. And how! But I appreciated his candor at each stage of my treatment. He is a compassionate fellow under that hard veneer, something I came to realize.
What do you say to someone dealing with a chronic illness? That depends on the person. I personally have no issues with death. I kissed it on the lips in December 2003-January 2004, and it was cold. Just don’t try to out-guess my doctors unless you have credentials that establish you as a bonafide WG/GPA specialist.
Then I got better, achieved a new normal, but I am aware of the dangers I face. Keep your germy little children away from me when they are sick, for example…! And don’t visit me with a cold. I am susceptible to respiratory illnesses. Your cold that is over for you in a week becomes something I might fight over two months, sometimes through bed rest. I know to wash my hands, a lot!
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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!]
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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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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!
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The coming of warm weather doesn’t appeal to me. I have difficulty with heat, perhaps a side effect of the Wegener’s granulomatosis, this disease I have that affects the small and medium size blood vessels. The how and why don’t make much difference: I hate heat!
The coming of warm weather has salubrious results if you are a member of the plant kingdom, however. This is the iris season where I live. We just went through the flowering crab apple (and other apple varieties) season a couple weeks ago. A bit earlier than that, to my delight, the rhubarb I planted last year made a small appearance. I think I planted eight plants, of which only two came up. From the two, I might yet get some rhubarb from the relatively larger one.
There it is! My little rhubarb! Actually, my little big one.
I’ve planted a couple of heirloom tomatoes, a Brandywine and another the name of which escapes me. Somewhere around the end of August, I should start to have too many tomatoes to deal with. The varieties I chose both are of the beefsteak style: one slice’ll do you because one slice covers the hamburger, BLT sandwich, whatever you have it on.
In past, when I had more consumers of tomatoes available, I planted up to eight plants. I’d make a delicious tomato plate with vinegrette and herb dressing (nasturtium, marigold petal, several varieties of basel, and two varieties of mint). Whew! That was garden eating!
Now, for the latest cat news!
Have I mentioned Louie can be willful and just plain obnoxious when he’s in a mood? My brother and my Seattle sister both have cats. They proclaimed Louie a sweet cat, but I testify to this: a sweet cat is still a cat! That’s my breakfast, my coffee, my juice, my chair. Yeah, like that!
The warming weather makes Louie, my ginger cat, restless to get outside and be a cat. This goes against my will for him. I live too close to busy roads to just turn him out. When Louie looked out the back door and found a visitor, keeping him in became harder yet. I call this familiar neighborhood cat “J. Doe”. Louie called it several names of his own before it fled, stage right. After this visit, Louie became much, much more interested in getting out on his own.
Even when the late spring snow came, and I let Louie experience wet paws, his wishes were delayed, not ended. J. Doe would have to wait for another day.
Louie’s behavior outside is reasonably good. I walk alongside or behind him. If you’ve ever “walked” a cat, you know they piddle around much more than most dogs. Sniff, rub, roll around in the loose dirt, just sit there, dig a potty hole (I approve, sort of- less litterbox waste to deal with, but an outside booby trap for an unsuspecting gardener.). When I’m ready to go in, usually when Louie starts to wander farther than I want to carry a 20 lb. (9kg) cat, I pick him up and take him back home. Yeah, he gets pissy about it, whining, threatening, ears folded back.
“Save it for your little cat friends, Louie.” Which, in this last photo, he demonstrates he did.
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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:
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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.
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“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"
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?
[Sorry, bad guess. Below is an example, perhaps not the best example, but the one I have to show.]
[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!
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I have faith. I am, in fact, an elder in the local Presbyterian church. But that’s not the type of faith I’m writing about today.
A few weeks ago, I received a small box in the post. It isn’t that unusual that I receive such boxes, but I was curious to open it to find what I’d ordered this time. I slit the tape sealing the box and opened the flaps, expecting music CDs, perhaps movie DVDs, because the box proportions suggested those treasures might be inside!
I cleared the packing away, and looked down in shock. Horror? Instead of something lovely, like a new J.S. Bach CD, the treasure turned out to be… three shrunken, black, organic somethings, the nature of which I could not guess. Then I found the packing slip under the black, mummified remains. Rhubarb! I’d forgotten I’d ordered rhubarb last fall, and these three scary things were it!
I have a rare form of vasculitis (Wegener’s granulomatosis) that nearly killed my body five years ago, but rekindled my faith, the first kind. Since then, the path to recovery left me less able to do gardening at first, though the strength needed (and a move from a house to an apartment, where the garden is much smaller) has returned mostly. I can do such things as plant tomatoes, if I wish, or lots of flowers (which I always have around me), or dried out, mummified rhubarb starts.
That’s where the other kind of faith comes in. To look at the starts, I would guess the best place for them would be the compost heap, if I had one, or the trash. Yet I have received such unpromising “bare root” packages before that turned into magnificent roses, lavender, grapes that were ambrosia and nectar in one, right off the vine! “I dunno,” I thought, because the “bare root” rhubarb starts looked, umm, unpromising!
I put the rhubarb starts in a plastic tub I’d filled to the top with water. “Over night” is the usual time you soak “bare root” starts, but I couldn’t imagine a week of soaking doing much to revive these specimens! I checked the next morning, decided to soak them 24 more hours. At the end of 24 hours, I checked for: 1. any sign of life, and, 2. any indication of which end was up because the starts, in the mummified state, didn’t give many clues. Both questions answered, at last! One end showed growth that suggested the top to me, even if the little shoots almost looked like roots.
Maybe another night’s soak would sort out the ambiguity….Which it did! The rooty-looking sprouts turned out to be the start of stalks. That’s all I need to plant the starts, which I did this morning after preparing the ground with lots of organic matter and rich, loamy garden soil, the way rhubarb likes it.
I told you this was about faith. It is! Gardening is an act of faith, a belief that working the soil to create a perfect environment for the flowers, fruits, and vegetables you like and want to grow will result in a harvest- in time, the Lord willing, and if you have faith, the other kind!
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