Chronic Illness: Six Stages of Grieving a Relapse

Sometimes there are articles that are hard to write but I know I have to. I can’t avoid it any longer. I have to write about my relapse.

Since my twenties I’ve had this condition called nephrotic syndrome that is prone to relapse. (Later I was diagnosed with scleroderma, an auto-immune disease, a separate issue) Nephrotic syndrome is rare which makes it weird that I would get it at all. It’s not kidney failure. It’s a dysfunction of the kidneys that can turn ugly if not treated but it is treatable. I relapse, I take prednisone, my kidneys recover, I try to get off the prednisone. That’s the short story. The longer one is more painful and has its share of emotional distress. That’s the story that is hard to write.

My last relapse occurred about six years ago. It was very bad and lasted quite a while, but once recovered and off meds I had a nice long stretch of health and I took total advantage of it. Anyone who has experienced remission from a chronic illness or an acute life threatening condition knows the feeling. Like a saved sinner I gave thanks every day for my cherished health.

Last month I wrote about the stress I was under. A few weeks after that I noticed a telltale sign that the nephrotic syndrome had returned. Dr Elizabeth Kubler-Ross’s five stages of grief apply so well to my emotional response to relapse I decided to use them as an outline.

Denial. The signs that I was relapsing were right in front of me but I kept telling myself, ‘Nah, I must be making this up. I feel fine.’ In the past I felt the symptoms of relapse before I saw the signs.

[I am hesitant to give you too much information, I don’t want to gross you out. Let me just explain in case you don’t know, that in diagnosing a medical condition there are ‘signs’ and there are ‘symptoms.’ Signs are those things that can be objectively observed by your doctor, and/or measured, like blood pressure, CAT scan film or lab reports. Symptoms are those abnormalities subjectively reported by the patient, like nausea or pain. Sadly in our Western culture signs are regarded more highly as “hard evidence.” Symptoms without signs can delegate a person to the “it’s all in your head” category, a special circle of hell many of us know too well.]

Usually I feel the symptom of pain before I see the sign of my kidneys releasing protein, the hallmark of nephrotic syndrome. This time was different. I saw the sign but chose not to believe it. Something else was causing the foamy urine. Soap in the toilet water, for instance. We tell ourselves all kinds of nonsense to deny the reality.

After a few days of pretending the signs weren’t there I bit the bullet and tested my urine which is easy to do with special litmus papers that measure the amount of protein in a sample. First I had to find my supply of uri strips, way in the back of a bathroom cabinet, dust off the bottle and test.




A Magical Five Minute Meditation from Toni Bernhard

A few weeks ago the old kidney problem I’ve dealt with since my youth came back. This relapse of  nephrotic syndrome after a blessedly long run of relative health, threw me for a loop, I admit.

Among other things, which I’ll write about soon, I felt an awful restless agitation brought on by a combination of the sudden appearance of  illness that sharply pulled up the reins on my activities plus high doses of the medication, prednisone, that I have to take to kick my kidneys back into healthy function.

A lot of people with chronic illness can relate to this crazy-making feeling. Our mind races, nags at us to do all those little and big chores that need to get done. Yet without the energy to back it up, worse if you are in pain which is terribly draining, it’s like being tied down to a post and whipped to get going at the same time.

Author, Toni Bernhard knows this feeling well. She wrote, How To Be Sick: A Buddhist-inspired guide for the chronically ill and their caregivers. Toni’s article posted on her Psychology Today blog, Turning Straw Into Gold, came at just the right time for me. She writes:

“…as I sat in the lounge chair in my backyard, I was suddenly overcome with restlessness. But I didn’t have the option to “get outta here.” As most readers know, I’m mostly housebound due to chronic illness.

As the restlessness turned to irritation, I thought maybe I should try to meditate, but the setting wasn’t right. So I made up a practice on the spot. It worked so well that I’ve been doing it every day. I offer it to you as five minutes of mindfulness magic.”

For days I had been working on resurrecting my meditation practice, knowing that while coping with my relapse my mind, and general health, really needed it. My practice has always been loosy goosy, and in the busy-ness of my life recently I had allowed even that to lapse like yesterday’s diet. So when I saw Toni’s tweet on Twitter: “Do you have five minutes? Five Minutes of Mindfulness Magic | Psychology Today #mindfulness #Dharma #Buddhism” I eagerly took a look and I wasn’t disappointed.

Here is an exquisitely simple guide to settling our spirit anywhere, anytime. No need to wait for a block of 30 minutes, no need to wait until you are in your special sitting place. A deeper, longer daily practice is still my goal, but I needed this helpful, do it now, it’s just five minutes invitation, to get me started. Thank you, Toni!

To learn more click here: Five Minutes of Mindfulness Magic

Photo courtesy Sofia Francesca Photography

“I go to nature to be soothed and healed, and to have my senses put in order.” ~John Burroughs

When Anxious: Remember Those Good Anchors That Keep You Secure

We often think of anchors as things that weigh us down in a bad way. Sometimes, when I feel overwhelmed, that awful feeling of slipping away without a tether just adds to the anxiety. That’s when I think of my good anchors, those people, places and things that provide a healthy attachment to who I am and to my life. When I remember my anchors I can breathe calm again.

The book I mention in the video, It’s Kind of a Funny Story is by Ned Vizzini, who spent time in a psychiatric hospital. The publisher describes the book: “At his new school, Craig sees his once-perfect future crumbling away. The stress becomes unbearable and Craig stops eating and sleeping—until, one night, he nearly kills himself. Craig’s suicidal episode gets him checked into [the psychiatric unit of Brooklyn] hospital where Craig is finally able to confront the sources of his anxiety. For a novel about depression, it’s definitely a funny story.”

“Deciding, choosing and then actually going to see a therapist are acts of great persistence and courage. Before you even say a word, a good therapist knows the bravery it took just to show up.” ~Dr Aletta

Photo courtesy of Tattooed JJ via Flickr

“I thank you God for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is yes.” ~e. e. cummings

For Valentine’s Day a Link for Everyone


Enjoy Your Valentine’s Day By Lowering Expectations

Five Ways to Leave Your Lover

How Do You Know If You Are Really In Love?

Finding Grounds for Marriage

My Vintage Romance

~Photo courtesy wallyg via Flickr



Valentine’s Day. Love it? Or Dread It?


Out of curiosity I posted a question on my Facebook and Twitter feed: “Valentine’s Day. Love it? Or Dread it?”

Of all the responses I received one, only ONE, enthusiastic reader said she “LOVEEES Valentine’s Day!” She didn’t say why, but I got the feeling she is one of those people who is infectiously happy most of the time. She made me smile even as I responded, “So far you’re the only one in my little survey who loves Valentine’s Day. I hope yours is as wonderful is you wish. :-)”

Most people, on the other hand, those who appeared to be in happy, settled relationships, could take it or leave it. A few said their anniversary was much more important to them. Flowers were nice in V-day but not a deal breaker. This response is a good example:

“I have now been married almost twenty-seven years and I can honestly say that not ONE day defines the love that I have experienced from this wonderful man in my life…”

How sweet is that? OK, please do not gag. In the interest of full disclosure I happen to fall into this category. I know how fortunate I am, like this young woman who said,

“I’m indifferent to it. To me, it’s another day. The day I truly want to express my love to my husband is on our anniversary. That being said, I do like to acknowledge the day somehow, like with a card. And I’d never turn away flowers or any other type of surprise. :)”

On the other hand, a lot of people wrote:

“Dread, hugely dread” it, “Dread it immensely!” or “Hate it!!!”

They didn’t say why but I can risk a guess that it has to do with the intense spotlight on coupledom on this one day especially if you are a singleton.

“I think it had bigger meaning when I was single!!! Really…. no big deal now. Buy the kids some chocolates and the hubby those nasty necco hearts that he likes the taste of and call it a day! But when I was single, man, Valentines day sucked.”

Yes, it’s sucky to have singleness held up as if it is an aberration when really, being single is often a GOOD CHOICE! If you are leaving a bad relationship, haven’t found the right person who appreciates you, or maybe you just like your independence and freedom to sleep in as long as you like, why shouldn’t you celebrate that!?

One Twitter follower wrote, “Does anyone love Valentine’s Day? Whether in a couple or single, it seems to cause trouble.”

An excellent observation! As if there weren’t enough pressure, the jewelers, card purveyors, chocolatiers and florists of the world conspire to inflate great expectations for the “Perfect Valentine’s Day.” Pity the boys. They seem to be most pressured to perform according to the commercial script, and you know what happens to men when they are pressured to perform. Limpsville!

A little advice: Take your partner off the hook. If you want a special V-day, take responsibility to make it happen in as low key way as possible.

And what does a single person do on the dreaded Valentine’s Day?

“I make sure I give myself some love and chocolates :)”

Works for me! Whether married or single, in a relationship or breaking up, a good dose of Self Love is always prescribed!

So you choose! In sweet solitude or with a friend, consider ordering dinner in, followed by a snuggle under a cozy blanket with either a bowl of popcorn, your favorite dark, dark chocolate, ice cream, a glass of wine (or vodka as suggested by an FB friend), or all of the above. Then order up your favorite movie or episode of Bones…

Could make for a sweet, sweet Valentine on February 14th or any night!

Photo courtesy Kelvin255 via Flickr

Feeling stressed? Hold your horses!

This sign is at the entrance to the stable where I keep my mare, Annie ( It’s also a sign for me to slow my life down, take a break, give myself permission to ease the pace and know that it will all get done. The important stuff does get done. It just doesn’t all have to be done today. Whoa!

Be the Raisin: What is Mindful Eating & Why Bother?

Mindful eating is not a diet, or about giving up anything at all. It’s about experiencing food more intensely — especially the pleasure of it. You can eat a cheeseburger mindfully, if you wish. You might enjoy it a lot more. Or you might decide, halfway through, that your body has had enough. Or that it really needs some salad.

Mindful Eating As Food For Thought

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