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3 Things Getting Lupus Taught Me

Hint: "Compassion for others" ain't one of them.

by
Kathy Shaidle

Bio

July 26, 2014 - 9:00 am
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Enjoy-Your-Lupus-house-md-4318152-450-374-300x249

When my PJ Media editor suggested that I write about having lupus, I almost said no.

I was diagnosed with SLE in 1991 and have been in remission since around 1995. My book about living with this chronic illness came out two years later. Like most writers, by the time a book comes out, I’m so sick – pun intended – of its topic that I dread having to revisit it.

Having been in remission for almost 20 years, I can honestly make the rather unusual claim that not even the perspective of hindsight has changed my ideas or feelings about what being a pain-wracked invalid was like. Not even a little bit.

I feel like I’m supposed to say the opposite: that looking back, I could have “handled” my disease differently, or learned other, “better” lessons from it, and so forth.

But then, from the very beginning, I didn’t fit the mold of the “disease of the week” TV movie heroine, or some “poster child” for lupus.

Here are some things I learned (or, perhaps more accurately, some pre-conceived ideas I had reinforced) when I was at my very sickest.

Warning: What follows is NOT inspirational. At all.

Top Rated Comments   
Exactly, Mark. I have doctor friends up here in Canada and if I had to, I could get their help jumping that queue (as we call it.) But that's not the right thing to do.

In the Canadian movie The Barbarian Invasions, a leftwing Quebecois character who is deathly ill refuses to use his son's help to jump the queue. "I believed in this system all my life and won't be a hypocrite" is his attitude. And good for him.

But believe me, in real life, socialist politicians/millionaires up here have NO qualms about flying to the US or going to the very few private clinics that operate legally here.
8 weeks ago
8 weeks ago Link To Comment
I hear what you're saying, have had some second-hand and first-hand experiences with similar cases, my mother being diagnosed and treated for "polymyalgia", treated with modest doses of prednisone, and "recovering" mostly from the acute disease - only to be trapped on maintenance doses of prednisone for the rest of her life.

The first lesson is that medicine and science does NOT have a quick fix for everything and anything. That is a lesson to be learned intellectually and emotionally for most people. Including doctors, many of whom never do learn it. In fact, even their diagnosis can be faulty. The TV show "House" actually showed that very clearly, if overdramatically.

Is there even such a thing as "polymyalgia"? Even the medical community itself is far from certain.

And here's where we do a little Internet medicine - during your illness and treatment and today, did you ever check your vitamin D levels? Altogether too late in the game I came upon that question, mostly in regards to my mother. In retrospect, and of course no way to prove it now, I wonder if her entire problem was not mainly one of vitamin D. With just some cheap vitamin D pills (and the concurrence of her physician) it seemed to me that the vitamin D *did* help my mother in the last couple of years of her life, enough so that the question of whether it had just come 30 years too late for her, is quite serious.

Congratulations on your recovery, and watch yourself around doctors. I hope that the science of medicine is better now, but we are still a century or three away from a medicine that even a great doctor can use as reliably in reality as they are all taught to pretend - which made a slight amount of sense say 100 years ago when the science they had was almost nil, but is somewhat offensive today when there is some science around, but it mostly plays a very small role in their daily practices.

8 weeks ago
8 weeks ago Link To Comment
"My country’s national religion isn’t Christianity, or even hockey.

It’s socialized medicine."


Exactly.

My aunt, a nurse all her life, was nearly killed by the Canadian system. Only because of her connections was she able to get the treatment she needed in time to survive.

After months of struggling with the normal process, and bitterly complaining and condemning the system, and pointing out that in America she'd have already been treated, she pulled some strings. She jumped the line.

She got the treatment, and she's fine now.

Now she praises the Canadian system because she never has to worry about the money. "I never saw a bill!", she proclaims proudly, "It's a great system!"

She won't tolerate a word of criticism of it.

The worst thing aboiut government handouts is the warping of the psyche it produces in its recipients.
8 weeks ago
8 weeks ago Link To Comment
All Comments   (45)
All Comments   (45)
Sort: Newest Oldest Top Rated
I'll have to read up on prednisone. Somehow it rest your immune system. It is nasty stuff and there had got to be a better way but until then.
5 weeks ago
5 weeks ago Link To Comment
I can testify that prednisone is a b1tch. It made me relentlessly nauseous and I swelled up to look like the Michelin Tire Man. What a horrible time...

But why is it that whenever I discover someone whose work I find remarkably insightful and eye-opening it seems that there is always serious hardship in their past? It's almost like there is meaning in suffering or something like that guy JP2 was always going on about...
6 weeks ago
6 weeks ago Link To Comment
One of my best friends was born Canadian. When her father needed two knee replacements he was put on a two year waiting list. If you go too long (about 18 months) not being able to walk there is significant mortality (and you don't have to pay their surgery). Now, he was a man with "friends" who were doctors so they conspired and when someone did miss a scheduled surgery, they called him. He went into surgery, without fasting, on about an hour notice around two months after he got on the list.

That is how socialized medicine works. It takes benefit away from those who have earned it, and gives it to those who know bureaucrats and have the right "friends".
7 weeks ago
7 weeks ago Link To Comment
Many people, particularily women, simply adore the concept of walking in for medical treatment and walking out without paying for it. Never mind that it will cost you in availability and quality rather than in money - It's Free!
7 weeks ago
7 weeks ago Link To Comment
Yep, two year wait times for knee/hip replacements are common. And that will only get worse as the population ages.
7 weeks ago
7 weeks ago Link To Comment
Kathy, my husband suffers from Rheumatoid Arthritis, so I know about living with chronic pain from him. People are always telling him to file a claim with the VA for disability benefits in case he got the RA from Agent Orange (he served in VietNam) but he says, "We have plenty of money, why should I take money from the government that I don't need. It won't make the RA go away."

We feel very fortunate that he has excellent health insurance to pay for the outrageously expensive monthly treatments. But I see him struggle with the pain every single day. I wish you well and hope your remission from Lupus is permanent. I don't know how you managed to take large doses of Prednisone every day. I have to take it occasionally for pleurisy and it gives me insomnia. I hate Prednisone, but it's the only thing that works for the pleurisy.
7 weeks ago
7 weeks ago Link To Comment
I admire your husband's principled stand. If only it were more common.

Yes, prednisone meant I only slept about 3 hours a night but I was so thrilled to be pain-free that I didn't mind. In fact, that helped me make up for lost writing time.

It works great but the side effects are truly awful.
7 weeks ago
7 weeks ago Link To Comment
I have never felt a real connection between myself and the writer of news articles until now, after reading this article. The thought of a real connection never crossed my mind, either. You are not alone in the kinds of assessments you have made regarding certain "sects" of society. I don't know how you feel about taking it a step further and distancing yourself from certain "sects" but I am going to give it a whirl. I am starting with democrats.
7 weeks ago
7 weeks ago Link To Comment
Thanks for leaving that comment. I appreciate it. It's always nice to know when something I've written has struck a chord with someone!
7 weeks ago
7 weeks ago Link To Comment
No wonder I like you, Kathy: you and I share the same attitude in this kind of thing.

I was the same way when I was diagnosed with rectal cancer eight years ago.

We're still here and relatively healthy - considering - much to the Left's bitter dismay.
8 weeks ago
8 weeks ago Link To Comment
Glad you're still here, Bob!
7 weeks ago
7 weeks ago Link To Comment
I hear what you're saying, have had some second-hand and first-hand experiences with similar cases, my mother being diagnosed and treated for "polymyalgia", treated with modest doses of prednisone, and "recovering" mostly from the acute disease - only to be trapped on maintenance doses of prednisone for the rest of her life.

The first lesson is that medicine and science does NOT have a quick fix for everything and anything. That is a lesson to be learned intellectually and emotionally for most people. Including doctors, many of whom never do learn it. In fact, even their diagnosis can be faulty. The TV show "House" actually showed that very clearly, if overdramatically.

Is there even such a thing as "polymyalgia"? Even the medical community itself is far from certain.

And here's where we do a little Internet medicine - during your illness and treatment and today, did you ever check your vitamin D levels? Altogether too late in the game I came upon that question, mostly in regards to my mother. In retrospect, and of course no way to prove it now, I wonder if her entire problem was not mainly one of vitamin D. With just some cheap vitamin D pills (and the concurrence of her physician) it seemed to me that the vitamin D *did* help my mother in the last couple of years of her life, enough so that the question of whether it had just come 30 years too late for her, is quite serious.

Congratulations on your recovery, and watch yourself around doctors. I hope that the science of medicine is better now, but we are still a century or three away from a medicine that even a great doctor can use as reliably in reality as they are all taught to pretend - which made a slight amount of sense say 100 years ago when the science they had was almost nil, but is somewhat offensive today when there is some science around, but it mostly plays a very small role in their daily practices.

8 weeks ago
8 weeks ago Link To Comment
You may be onto something. I was told to start taking Calcium supplements, and since they don't work without Vitamin D, I always buy the capsules that combine both. I also needed the Vitamin D because I was supposed to avoid too much sunlight. Maybe that made a difference.

Massive prednisone is a mixed blessed. It was the first thing to relieve my pain, so I was ecstatic. But the side effects are horrible. I went from a size 0 to a 14. My face was huge and I had "crop circles" of hair growing on my back!

I had to stay on prednisone for about 3 years, because that's how long it took to safely taper down from 60mg a day to zero.
8 weeks ago
8 weeks ago Link To Comment
My wife had to take massive doses of Prednisone for years and years (kidney failure and multiple transplants). It extended her life greatly but she had the same symptoms that you mentioned plus depression. It wasn't until she was gone that I was able to fully realize how awful it was for her and how heroic was her ability to gouge out a life for us in spite of at all. More often than we realize, the cure is as trying as the disease. My admiration for the way you have handled your ordeal and thanks for the insights and inspiration.
7 weeks ago
7 weeks ago Link To Comment
Vitamin D is trendy now, especially for oldsters, and part of the reason for that may be that they tend to stay out of the sun even while perhaps their bodies need it more than ever.

If you are not taking at least 1000iua day now (2.5x "daily minimum") you probably should be, even assuming you're already consuming dairy for the calcium and added D. Google up the symptoms of D difficiency. Also, the dangers of too much D are now being adjusted, it takes a *lot* of D for a long time before anything like that becomes an issue, there are now 25,000iu capsules on the shelf in most stores and you'd have to take them for a month to be in much danger at all, and if you're old or otherwise not absorbing it well, not even then.

FWIW my own brief exposure to stronger cortisones was virtually all side-effects the doctor swore could never happen at those "low dosages". Wandering around the Interwebs I later gathered about 10% of the population has the same immediate negative reactions that I experienced.
8 weeks ago
8 weeks ago Link To Comment
Yes D is super trendy right now. I'm taking 800 iu a day (its part of my Calcium supplement. I'll check out more about it. Thank you!

I noticed that as soon as I got down to 15mg prednisone, the visible side effects started to disappear. On 5mg I didn't notice anything either way. It was like they were inert.
7 weeks ago
7 weeks ago Link To Comment
I can relate. I can only say that I'm inclined to call it the Pharmaceutical Industrial Complex, with the maintenance drugs being as bad as the disease. Funny how the root cause for auto immune diseases is obscured with the introduction of each new Biologic maintenance drug. (Manage your symptoms R Us)
8 weeks ago
8 weeks ago Link To Comment
"My country’s national religion isn’t Christianity, or even hockey.

It’s socialized medicine."


Exactly.

My aunt, a nurse all her life, was nearly killed by the Canadian system. Only because of her connections was she able to get the treatment she needed in time to survive.

After months of struggling with the normal process, and bitterly complaining and condemning the system, and pointing out that in America she'd have already been treated, she pulled some strings. She jumped the line.

She got the treatment, and she's fine now.

Now she praises the Canadian system because she never has to worry about the money. "I never saw a bill!", she proclaims proudly, "It's a great system!"

She won't tolerate a word of criticism of it.

The worst thing aboiut government handouts is the warping of the psyche it produces in its recipients.
8 weeks ago
8 weeks ago Link To Comment
Amen, Mark.

What astounds me with people who exclaim how great something is because it's free is how they don't seem to be concerned about who pays for it. Nothing is free.
8 weeks ago
8 weeks ago Link To Comment
Exactly, Mark. I have doctor friends up here in Canada and if I had to, I could get their help jumping that queue (as we call it.) But that's not the right thing to do.

In the Canadian movie The Barbarian Invasions, a leftwing Quebecois character who is deathly ill refuses to use his son's help to jump the queue. "I believed in this system all my life and won't be a hypocrite" is his attitude. And good for him.

But believe me, in real life, socialist politicians/millionaires up here have NO qualms about flying to the US or going to the very few private clinics that operate legally here.
8 weeks ago
8 weeks ago Link To Comment
Exactly. Now we have citizens who think it's fair to charge 99 cents for a download but a doctor's time should be free.
8 weeks ago
8 weeks ago Link To Comment
Love the term "disease industrial complex," Kathy! I've been dealing with severe migraines since age 12 and have found that I really, really don't want to talk about it, dwell on it, or s tewover it. It sucks, I hate it, but overthinking it just adds depression to the physical problems. I'm sure all the support groups etc. are helpful for some people, but denial is a much happier place for me. :)
8 weeks ago
8 weeks ago Link To Comment
Glad you understood, Paula. Maybe they work for other people. In fact, AA has worked for me since 1992 ("but for the grace of God" etc.) Yep, I was dealing with lupus at the same time. Fun!

I don't go to AA meetings anymore but went to maybe 5 a week for the first 10 years.

But I found myself listening more than sharing. Like you, I find going over the same things again and again does more harm than good. I guess that is our temperament.
8 weeks ago
8 weeks ago Link To Comment
I admire your strength and determination, Kathy!

Charles Krauthammer also seems to share the same temperament. I wrote about it earlier this year if you're interested. http://pjmedia.com/lifestyle/2014/01/26/youre-not-as-happy-as-you-think-you-are/
8 weeks ago
8 weeks ago Link To Comment
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