Tag Archives: healing

Accessorize Snow Wise

There are so many pretty ways to realize your theme for a wedding without causing yourself to cringe when you later look at the photos. I’d be cringing right now if I’d gone all out, say, with a wedding gown or even bridesmaids’ gowns embroidered with snowflakes. I did investigate options for about a day before deciding classic with a sprinkling of snowflakes was the much better way to go. Looking now at the pix, I am glad I did.

I can thank my my dearly departed mother, who had strong and wise opinions about how far to take a theme. I remember her planning a Halloween-themed birthday party for my sister one year when we were kids. She went all out on the decor but drew the line on serving guts in blood (spaghetti and sausage in tomato sauce). It’s all fun and games, she said, until a kid runs home crying about being forced to eat a bowl of guts and a piece of bone meal cake. Who wants to answer that call, my mother asked, especially if the little party-goer ended up barfing on the new sofa once she got home?

I never forgot that bit of advice and it’s served me well.

Continue reading Accessorize Snow Wise

Gut Reaction to Fashion: Choosing a Painless Gown

Twenty-one days after my reproductive organs were yanked through my birth canal, I  accidentally went wedding dress shopping.

I don’t recommend this.

I don’t recommend any kind of shopping three weeks post surgery, unless you traverse said shopping emporium by way of velvet-lined, pillow-packed coach and are accompanied by people who fetch what you want and bring it to you. Bonus points if they pay for it, too.

I especially don’t recommend jamming yourself into couture created by camouflaging cinching corsets with swaths of satin and silk that some commission-currying consultant will clamp so snugly to your corpus you can’t cough, all to show you how to look like a million skinny bucks. Continue reading Gut Reaction to Fashion: Choosing a Painless Gown

The Secret to Successful Surgery

Dr. W looked oddly casual in his surgical scrubs and snazzy black sneakers, which he confessed would come off–the sneakers, not the scrubs–during surgery. It gave him better balance, he said, while he operated using the daVinci robot. He chatted amiably with us while we waited for the signal that the OR was ready, until the lead surgical nurse came in, scowling. The surgical plan wasn’t in my chart, she said. Dr. W looked, and sure enough, the printed plan wasn’t there.

Yikes. Continue reading The Secret to Successful Surgery

10 Lessons Sans Carols: #1 Stille Nacht

We’ve finally gotten to number one!

I had no idea when I started this series that writing ten posts about lessons learned from the Thanksgiving/Christmas/New Year’s holidays would test me so much. The testing has enriched me, so I’m not complaining. I’ve learned a great deal about myself by processing the pile of pictures past perfect. Going even further, I’ve yanked the lenses right out of the snap-trappers taking those freeze-frames and I’ve discovered surprising convexings in the glass. Continue reading 10 Lessons Sans Carols: #1 Stille Nacht

Ten Lessons Sans Carols: #3 The Family Fonz

Ah, family. It’s the unit that nothing trumps in importance. It’s the unit into which you didn’t choose to be born but to which you always are connected. It’s the unit that’s thicker than water (its blood, anyway), the unit that measures success in terms of what it’s done for you and failure in terms of what you haven’t done for it. It’s the unit source of the genetic weaknesses causing your chronic illnesses (including celiac disease) and the genetic code for why you have/don’t have a widow’s peak or a hitchhiker’s thumb or blue eyes and red hair. It’s also the unit that psychologists use to explain who you are and how difficult it will be to fix you.

I love my family. My family is awesome, especially my Dad, who for decades has suffered the burden of being Henry Winkler’s doppelganger. Back in the seventies, people would chase Dad through the airport, convinced he really was the Fonz and just didn’t want to sign autographs. Three decades later people still come up to him and ask him if he knows he “looks exactly like the Fonz!” Continue reading Ten Lessons Sans Carols: #3 The Family Fonz

Well Not All Well

I’m still basking in the glow of the good news that my gut has healed so much. So golden was the glow I firmly believed I could turn persistent aches and pains into chalk dust and blow it from my fingers.

Alas, of course, mind only gets so far over the matter of pesky respiratory bugs. No matter how much positive thinking I rain upon feelings of infectious illness, the illness persists until I drag myself to the doctor and submit to another course of antibiotics. This applied as recently as Sunday, when I finally stopped telling myself my tonsils didn’t look THAT bad and my face didn’t hurt THAT much and I probably could kick this bad feeling because it, after all, probably just was allergies.

Probably. The probability that I could kick this malaise crouched in the tail end of the distribution at about 10%. I know the signs and the symptoms. I’ve had four to eight sinus infections every year for years. Continue reading Well Not All Well

This Is a Test: The Wellness of Failure

Test results change lives. They can define and redefine a person in a flash. Remember how you felt when you first passed the test for your driver’s license? In a matter of minutes you went from kid passenger to Grown Up Driver. How about the SAT or the GRE or the MCAT? Those scores sealed your academic fate: told you and whoever else accessed them what tier school you could or could not attend and how many degrees you could pursue. One minute you’re dreaming of climbing the steep hills of Ithaca in a Cornell red jacket and the next you’re standing in line with a mountain of textbooks, sporting the muddy colors of Whatsamatta U.

I still remember the moment the dermatologist came into the exam room to tell me the skin biopsies came back with a diagnosis of dermatitis herpetiformis. My face lost its color as I thought this meant I’d acquired some horrific contagious disease that would render me dateless for the rest of my life. Continue reading This Is a Test: The Wellness of Failure

The Failure of Wellness – Part 2

Last week I completed my last clinical visit for the trial. Maybe to prolong the experience, I lost my way in the office complex. For some reason I was sure the building was on the right, when, in fact, it was and remains on the left. How did I misremember that? I kept driving around and around the buildings on the right, believing number eight would pop up between numbers twelve and sixteen. It didn’t. I finally decided to drive to the other side of the complex and there, eight appeared suddenly between seven and nine. Imagine that!

Once inside the correct office, I was whisked into the exam room, which still registered as near-Arctic on the thermostat. Once again this proved problematic for drawing blood, though the coordinator only stuck me twice before hitting the vein. My blood trickled into the test tubes, Continue reading The Failure of Wellness – Part 2

The Failure of Wellness – Part 1

The bad news came by phone: “Bad news. You failed randomization. You measured 2.5 but needed to be no more than 2.”

“Oh,” I lamely replied, wondering what 2 and 2.5 meant. Millimeters, maybe? I didn’t ask, though. I knew it referred to the measurement of villi and how damaged they might be from exposure to gluten.

The coordinator sounded so dejected. “We’re really disappointed,” she continued, and I thought I heard her add “in you” under her breath, but that was my inner voice, not her outer one.

“I’m so sorry,” I said, feeling as if I really had failed her, failed all of celiacdom. Continue reading The Failure of Wellness – Part 1

Post Test Post: About the Endoscopic Exam

Gluten SamI survived the upper GI endoscopy. Not that I doubted I would: it’s not that risky a procedure, aside from the potential of having one’s esophagus or stomach or duodenum punctured by the endoscope, which is not common because that thing is much more flexible, and, therefore, much less rigid than most of my elementary school teachers.

The whole thing went down in a lovely suite in the labyrinthine Doctors Center at St. Joe’s. It’s easy to tell Emory now has its hands on the place, signage notwithstanding: tunnels, corridors, and bridges connect the disparate buildings one to another, rendering the outdoors and crosswalks moot. Classic Emory. Snaking our way from the parking deck through what used to be the hospital to the right building I felt like an intruder traversing some of the more, shall we say, intimate corridors. No matter. We made it to the assigned suite at the end of yet another corridor on yet another floor.

I shouldn’t have worried about “strangers” providing my medical care. The nurses were the kindest and most gregarious I’ve ever met, and I’ve met quite a few nurses in my years of having multiple chronic and acute illnesses. The nurse who inserted the IV needle did such a good job I have no bruising, indeed, no sign of having had an IV except for a tiny pinprick on the back of my hand. That’s a first. And when tears filled my eyes not because of pain but because of nervousness and gratitude for this opportunity, the nurse rushed and got my stalwart ace driver and cheering-section-of-one, David, to keep me company until the anesthesiologist came in and shooed him out. David was a champ, making me laugh so much I was afraid I’d pull a stomach muscle. He’s extraordinarily gifted in the wit department.

Before that, I had the, ahem, pleasure of being part of the listening crew as an older gentleman was wheeled into the curtain-enclosed “apartment” next to mine to regain consciousness after some lower GI procedure requiring that 24-hour cleanse the day prior. Maybe three minutes after arriving, he began mumbling about a “honey-do” list waiting at home for him.

Then he wanted to know who the woman was at the end of his bed. When the nurse told him it was his wife, he mumbled, “What’s she doing here?”

The nurse and his wife assured him that she was there to drive him home and take care of him. He replied, “She’s got a list of things for me to do at home. She’s come to get me to do them!” I thought I heard him swear then, but I can’t be sure. The nurse assured him and his wife that he wasn’t doing anything except resting for the rest of the day. He said, “I never rest,” at the same time his wife said, “He does that all the time!”

The nurse then encouraged him to expel the air that had been pumped into his lower GI tract during his procedure. He kept mumbling about being overworked and having no time to rest. The nurse again encouraged him to try to push out the air from his gut because his belly was quite distended and would become very painful if he didn’t. The gentleman then quite loudly said he was 72 years old and knew when and how to fart and he didn’t need some woman telling him to fart. When his wife tried to soothe him and encourage him to listen to the nurse, he growled.

“And you! You want me to fart now when all you do is complain about it when we’re home?”

Thankfully, they moved me before he succeeded in passing anything more than his irritation.

The anesthesiologist came into my “apartment” and stopped when she saw my purse and David’s backpack on the floor. She looked at them as if they were sewn together woodchucks and asked, “What’s that?”

David hastily grabbed the bags (I asked him to hold mine during the procedure with the warning not to play with my phone or steal my gum) and said, “Oh, that’s my backpack and Sam’s purse.”

The anesthesiologist then coolly told David to go away.Poor David just slunk away, the bag man unable to de-Fendi himself.

When he was gone, she asked me the usual battery of questions to determine if I was in danger of coding once they put me under. I happily answered “no” to most of the questions: no diabetes, no stroke, no false teeth, no heart disease, no high blood pressure, no one stole my luggage before boarding. Then she, like the nurse, argued with me for allowing a doctor to perform the Nissen fundoplication to treat severe acid reflux back in 2007.

It’s a little late to be telling me I shouldn’t have done it, I thought to myself, as I had to explain yet again how my lower esophageal sphincter had quit working and stomach acid kept refluxing into my lungs and sinuses, causing chronic infections and scarring and how post procedure infections were much less common. When the anesthesiologist said, “Well, the Nissen causes all kinds of other problems,” I not too sweetly replied, “Like not being able to throw up at a moment like this.”

They quickly wheeled me into the procedure room.

The room, of course, was freezing. I asked for another blanket just as the room started to swim. I remember asking the anesthesiologist if the room was supposed to be blurry and she said something to the effect of, “Poppies make you swim,” or at least that’s what I thought she said as they placed the block in my mouth and told me to relax.

I don’t remember having that moment of panic as the icy sedative crawled up my arm. Instead, I felt a weird floaty feeling as the room started to disintegrate. They told me to close my eyes so I wouldn’t hurt them and I remember thinking it was a funny thing to say because I hadn’t planned on opening them at all.

I do remember meeting the doctor who was to perform the procedure. He wasn’t wearing scrubs, but, rather, a tie and some expensive suit trousers. I think he wore glasses, too, but I saw him for all of one minute so I’ll never be able to pick him out of a lineup. He seemed nice, even though he asked me why I was doing this when I seemed so healthy. “For schience,” I think I said.

Next thing I remember I was running for the door. I had to find the passage back to the place I was before.

No, wait, that’s Hotel California.

I regained consciousness some time later. The clock said a half hour had elapsed. No one tried to school me in the finer points of air expulsion, thank God. They did tell me to drink water, which I managed to spill on myself. I remember feeling like I was in Hotel California when the doctor came in to tell me my gut looked really good. He said my small intestine looked normal but I did have too much bile in my stomach. He took biopsies for microscopic examination, which is where they would find the evidence they need either to advance me in the clinical trial or cut me loose.

Normal. Normal! I have a normal upper small intestine! When was the last time someone said that? Had someone ever said that? Not that I could recall. As I sit here now, typing this, I marvel again at that word: normal.

ScallopingWhen I was diagnosed with celiac disease in October 2009, the endoscopy showed “severe scalloping and nodularity” in the small intestine. That was evident in the pictures they gave me as souvenirs from the trip through my alimentary canal. You can see the damage in the pix from diagnosis showing “scalloping and nodularity.”

And here are the pix from this round. Endoscopic Pic 2014It’s a miracle. The gluten free diet works! It really works! And my body works! (Full disclosure: I also became alcohol-free and this being poison free really has paid off).

So now I wait to hear the results from the biopsies, but either way I win. If there is enough damage to the villi, I get assigned to one of the treatment groups. If not, I still win because I now know how powerful the gluten free diet and gluten free living are.

This makes me think of the people I’ve known who had diagnosed celiac disease but who said being gluten free 100% of the time was too hard. They said they cheat sometimes because they feel like they deserve a break. A break from what? A break from healing? A break from not being poisoned, which means a break so they could be poisoned? When the gluten free diet can produce these kinds of results, why on Earth would someone deliberately ingest gluten?

Maybe they don’t really understand how important it is to be 100% gluten free 100% of the time. Maybe they don’t realize how much better they can be, how much healthier they can be and how much better life can be. If you don’t believe my words, look at the pictures, and if you don’t believe those, go get your own set of interior shots pre- and post- gluten free. The results are well worth it.