Post 542: Phil Berggren of Swift Current, Saskatchewan

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 berggren

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.”

Post 533: Spoon theory and chronic illness

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.
spoon theory

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!

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:






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!]


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: