“No Good Deed Goes Unpunished”

These words, sent to me by one of my Sane People, one of my Voices of Reason, prevented me from getting really nasty with a parent of a child with IBD today.
A parent who, I am certain, is scared out of their mind, and wants only the best for their child.
But still, this is my page, and I will let myself process here, so that I may sleep tonight.
What I wanted to write, what I was screaming in my Private Voice Inside My Head, was something like this:
“I assume you are neither a nurse, nor a doctor. I certainly hope not, because I would genuinely fear for any person under your care.”

In my work as an Oncology Nurse Navigator, we are very open about advising people to be wary of advice they may read via Doctor Google. We provide extensive phone lists and website listings for reputable sites for patient education and support services.

We remind people that “Dr. Google” did not actually attend medical school.

I have spent years, literally years, trying to get medical doctors in Oregon and Washington to take the Specific Carbohydrate Diet (SCD) seriously. I have worked tirelessly, alongside parents of kids with IBD, and other adult IBD patents, trying to get the medical community to consider that diet, does in fact play a scientifically reasonable, Evidence-Based role in controlling IBD symptoms and disease progression.

I have also volunteered valuable vacation hours, and sacrificed precious time with my own family, to work as part of the medical staff for Camp Oasis, the CCFA’s medical camp for kids and teens with IBD.

I really don’t ask, or expect, anything in return. Except perhaps for a little respect. Respect for the fact that I went though 4 years of nursing school learning about the human body, disease processes, immunology, biology, pharmacology.

Then I was diagnosed with Crohn’s disease, I made GI education my next topic of education. I became an expert; yes… a goddamned expert. I went to multiple NDs, and GIs, and left no stone unturned.

Yes, I have studied fecal transplant, and Helminth Therapy, and Acupuncture, and Mindfulness, and have gone to bat with drug representatives from major pharmaceutical companies.

I am 46 years old, and don’t want myself on IV biologics or low-dose chemo any more than I want your 7 year old daughter, or someone else’s 12 year old son on a lifetime regimen of medications.

And I’m here to tell it to you straight: if you want your gastroenterologist, or your child’s pediatrician to take you seriously, and give serious thought and consideration to complementary therapies… think before you open your mouth. Don’t let fear be your guide. And put a little trust into those of us who dedicate our lives to health education.

Do your own research, sure. Ask questions. ABSOLUTELY. But please don’t blatantly disregard the research that has been done by people who have the knowledge, and who, YES, really do also want the best for you and your family member.

This was the SCD Ultimate Challenge in October 2O13. Mr. Blitch and I were visiting friends and family in North Carolina for our 15th anniversary. I was strong and healthy, 117 lbs., and following strict SCD. Eating SCD “legal” snacks out of our rental car, and finding restaurant food that wouldn’t land me in the hospital was the challenge, and I was up for it.

2O15 was a new faze of the Ultimate Challenge: maintaining my health and perky “can-do” attitude while transitioning my 81 year old dad from California to Oregon, assisting with Hospice care for two beloved family members, parenting a teen, working full time, and trying to make it to another wedding anniversary ~~ well. 2O15 was a special kind of hell.
A special kind of hell where in addition to dealing with grief, and loss, and depression, there was also a 30 lb weight gain and a closet full of clothes that I couldn’t squeeze into.
3O lbs may not seem that bad, but I’m 5’2″ if I stand on my tiptoes. 30 lbs spread over 62″ … it’s beyond Rubenesque. And I can’t afford new clothes.

I may not be feeling perky, but I’m still in the game. I still believe that SCD works for me. I am happier, I have more energy, my guts don’t scream at me for relief when I am doing it, and doing it 100%.

One of my biggest ongoing challenges to following SCD, is simply the fact that we have a tiny 193Os era kitchen with no dishwasher.

This weekend, I made a huge batch of bone broth, and was going to start in on a bunch of other things for the week ahead, when Capital L Life threw me another curve ball.

Mr. Blitch came down with some nasty stomach bug and was yacking like Linda Blair in The Exorcist. Normally, I’m a gal who likes to clean her house with Mother Nature’s gentle products; vinegar, lemon juice, baking soda.
But today, out came the gloves and the Clorox and the Lysol. Fuck it. I’m only 3 months into my new job, and not exactly rolling in PTO.

Dinner, also, needed to be made for myself and the bottomless pit that my son has become. I was all about SCD, minimal dishes, and something that would feed us both and provide leftovers.

One of my favorite winter comfort foods used to be cabbage rolls stuffed with meat and rice. Rice is not SCD legal (no grains, whatsoever), so “riced” cauliflower is a great alternative. Also, I think it’s been over a decade since I’ve actually made this dish, as the whole process of steaming the cabbage, and rolling up the neat little stuffed rolls is above and beyond what I can handle. So, I found a few brilliant recipes: someone who actually is capable of problem solving in a way that I am not realized that you can just chop all the goodness up, and turn it into a casserole. Mine was ugly as hell, but it was delicious. So, well done, Me!

The other kitchen time and money saver that I have come up with over my years of doing SCD meal prep, is that I divide all my scraps into two piles:

Bowl on the left is scraps for my hens. Bag on the right contains trimmings that go into the freezer for the next time I need to make broth. I don’t waste a dime. And the payoff for feeding my hens an awesome variety of kitchen scraps? This:

The bowl, by the way, was made by one of our clay art friends in North Carolina. This is a piece Mr. Blitch bought for me on that anniversary trip in 2O13. I fucking love this bowl. The way Gollum loves the Ring.
But I digress, the potter is Michael Kline. You should check out his website.

Here is the recipe that I pulled together from several sources to work for my needs:

Nurse Apple’s Cabbage Casser-NO-Roll.

Ingredients:

~ One pound ground meat
~ One large onion, diced
~ One green bell pepper, diced
~ One tsp Hungarian Sweet & Spicy Paprika (Paprika + Cayenne)
~ 1/2 tsp salt
~ 1/2 tsp ground pepper
~ Two cups crushed tomatoes (fresh or no-sugar added canned)
~ 7 oz. jar organic tomato paste (I use Bionaturae brand)
~ 1/2 head of cabbage, chopped
~ One cup bone broth

Instructions:

~ Preheat oven to 350 degrees
~ Brown the meat in a cast iron skillet (or other pan that is oven safe)
~ Add onion & bell pepper, sauté for 3 to 4 minutes
~ Add spices, stir
~ Add tomatoes & cabbage, turn off heat, stir to combine
~ Add broth
~ Bake covered for 40 to 45 minutes
~ Uncover, keep baking while you cook cauliflower “rice”

(*Riced cauliflower: steam one head of cauliflower for 15 to 20 minutes, drain, mash up with butter or coconut oil, salt & pepper).

By the time you mash your cauliflower, the Casser-NO-roll should be done.

Serve that shit up, and find someone to do the dinner dishes. Or use paper plates, and burn them in your backyard to upset the mean old lady next-door who hates your husband’s sunflowers.

I had thought about writing a Year in Review, and then the little part of me that is able to not dwell, fester, and agonize over things past said, “Chop, Chop! Let’s move along now!” like Mary Poppins, or some highly efficient 19th century schoolmarm.
In that spirit, I can happily record what to date may have been my best kickoff to a New Year in the history of ever. My personal best, anyway.

I’m a Quaker, but somehow the Quakers (surprisingly, really), aren’t noted for their BSN programs. So capital L Life led me to a Catholic nursing  school: the University of Portland.
I am eternally grateful for that experience, in countless ways. That being said, the biggest party favor thrown into the mix into the Special Kind of Hell that is nursing school, came in the form of my own personal, walking, talking, angel.
This is her with my son in 2011:

Meet Angie, the Eternal Optimist.
This amazing individual left Portland several years ago (bitch), to pursue a career in public health nursing (saint). She lives in Ontario, Oregon. Ontario is a splendid place and all, but don’t be confused; it bears absolutely no resemblance to Ontario, Canada. In fact, really its worst offense is that it took my best friend out of Portland and to the very border of Idaho. Whatever. What. Fucking. Ever.
In a rare flash of brilliance and pre-planning that actually panned out; I suggested that we meet for New Years halfway in the middle of Interstate 84, in Pendleton.
Somehow, someway, there was not a blizzard, there was not a Crohn’s flare, there was not a pet in the hospital, nor a human family member in need… WHOAH! … and we each landed safely at our destination.
Let me just start by saying that the Pendleton House B&B is hands down, the most lovely and comfortable B&B I have ever parked my weary self in.
Our hosts were warm, and welcoming, and genuine, and funny as all hell. They made us feel special, as if we had just entered into the home of some beloved long lost relatives. (Or maybe Angie just paid them extra on the side to make me feel that way. Either way, I was in a state of bliss for the entire stay.)

We drank wine, we ate amazing food. We walked for miles and miles in the  -4 degrees celsius weather. We walked to nice restaurants, and sketchy bars, and Circle K for hot coffee when nothing else was open. We had a fucking blast.

Magic happens when you least expect it sometimes.
Well, there is always magic when I am with Angie, so I shouldn’t be surprised. Just pleased. Just really fucking tickled that we were able to ring in 2OsixtEEn together.

With love, and best wishes for less cancer, and less Crohn’s, and healthy pets, and kittens and unicorns in the coming year,

~Nurse Apple. 

The beautiful thing about the kind of Feminism that I was raised around in the Bay Area of the 1970s and 1980s, was that it was truly a creation, a meld, of what all the mothers, grandmothers, college students, college professors, housewives, business owners and civic leaders wanted it to be. My friends’ mothers, my teachers and our neighbors wove a Carole King-esque tapestry that shaped the Feminista that I am today.

Both the women that I knew in person, and the female public figures that were held in high esteem by my mother’s peers added to the richness of that societal tapestry. Notable women that come to mind when I think of  my childhood (in no particular order) include:

• Dianne Feinstein
• Barbara Boxer (1982, California District 6, United States House of Representatives. Winning campaign slogan: “Barbara Boxer Gives a Damn’)
• Geraldine Ferraro
• Lilias Folan (PBS: Lilias, Yoga and You)
• Alice Waters (chef and proprietor of Chez Panisse restaurant and cafe, Berkeley)
• Loretta Swit (aka Major Margaret Houlihan)
• Billie Jean King
• Martina Navratilova
• Maya Angelou
• Gloria Steinem
• Bella Abzug
• Beatrice Arthur (aka Maude) 
• Betty Freidan
• Molly Ivens
• Rita Mae Brown

Now I know that Julia Child would figure prominently into similar lists that might be drawn up by many of my peers, but this was part of what was unique about my mother’s brand of Feminism. She prided herself on not knowing how to cook. Or bake. Or type.

To clarify, she would cook enough to feed (physically sustain) herself and her 2 kids. And she could type well enough to submit papers for a bachelor’s degree, a master’s degree, and two-thirds of a Cal Berkeley PhD program. But she had her standards about the type of women she was interested in emulating. Lilias was often on our TV, but honestly, Julia never was.

The only reason that Alice Waters made the list was because she was such a force in the community I grew up in. Many of my Berkeley High School friends aspired to jobs as sous chefs, servers, or even bussers at Chez Panisse. Oh, and many of us had Chez Panisse posters on our walls. Because, you know, David Lance Goines. I digress.

Point being that Alice Waters was radical; she was active in the Free Speech Movement of the 1960s, and a pioneer in the Edible Schoolyard and Edible Education program 3 decades later.
In 1995 Waters established the Edible Schoolyard at one of my alma maters: Martin Luther King Jr. Middle School. The program hosts a 1-acre organic garden and kitchen classroom, and the Edible Schoolyard has developed into a broader School Lunch Initiative.

But back to what I actually was fed… I would be hard pressed to tell you which was my favorite meal growing up, but it looked something like this:

Or maybe this next one, as I could never decide which I loved best: the apple cake cobbler, or the chocolate cake…

In all fairness, my parents were divorced in the early 70s, and my dad lived  on the other side of the Bay. So I was raised by a single mother who was always either teaching math, science, or computer classes at one of the local community colleges, or working on her own PhD program coursework.

When my mother did cook, she came up with stubbornly creative One-Pot Wonders such as her infamous “clean out the refrigerator soup.”
I shit you not. She would pick up some onerous grain (bulgar, millet) that she found at the Berkeley Co-op. Then she would take all the near-empty bottles and jars of things such as ketchup, soy sauce, and grape jelly out from the fridge. She’d line them up and pour hot water into each, recap, rinse, and dump into the soup pot. Some type of vegetables were involved; a few carrots, an onion.

I take a lot of teasing for my own lack of skills in the kitchen. For my senior year of high school I left Berkeley and went to a Quaker boarding school in the foothills of the Sierra Nevadas. We slept in A-frame cabins with electricity but no plumbing. Students all participated in a cooperative work-job program. We took turns chopping wood, cleaning classrooms and public areas, doing meal prep and cleanup. My first work shift was meal prep for the communal dining hall. I was handed a garlic press, and told to “go do the garlic.”

“Do the garlic.”
I still feel my face flush with embarrassment when I think back on this confusing moment. I knew what garlic was… it was the powdered granules  that were pinched and tossed into Refrigerator Soup. Or sprinkled over butter on the boxed Idaho Spuds. Right?
But this curious metal torture device… what in the world was I expected to do with that?

*Note: you can tell this is not a box from my Berkeley teen years. Photo on the right proudly states “Since 1933 – gluten free.”
No one, not even the Berkeley Feminista Mamas, nor the Quaker boarding school kitchen crew gave a shit about gluten. And whoever was eating powdered boxed Spuds in 1933… I’ll wager they weren’t overly concerned about gluten during the nadir of the Great Depression, either.

But surely I’m not the only person who had busy or absent parents and was subsequently raised on frozen, canned, or boxed foods.
I wonder what the 15 women on my list ate, and/or fed their kids (the ones that had kids). How did bringing about gender equality affect the look of their pantries and dinner tables?

And with that thought, I leave you with Judy Chicago. The Dinner Party (1974-1979)

More times than I would have liked, I have been cast into the role of oncology RN for family friends or close neighbors. I have always prided myself on my adherence to HIPAA (aka TZL: Tightly Zipped Lip).

Today, the tables were turned a bit on me. I attempted to take a mid-morning break from my nursing duties and enjoy a quiet hour of sipping my 64 oz radiopaque contrast medium.

I was settled into my waiting room chair, novel in my lap, when into the otherwise empty room walked the spouse of one of my patients. As I was taking my first dram, our eyes met; the day was taking an unexpected turn.

There was a moment of confusion; I was dressed in a vintage PBS t-shirt and craft fair scarf. But my casual dress was not a deterrent, nor was the conspicuous hospital ID band around my wrist. This family knew me, trusted me, relied on me. Their loved one was in for a 90 minute diagnostic evaluation prior to Radiation and Chemotherapy planning, and there I was. Alone in the room, there was no escape, and really: no need. I sipped, we chatted. I comforted, and in doing so was in an odd way comforted myself.

I kept the normal boundaries; I was there for a medical exam of my own, but no details were disclosed. The focus was on my patient’s family. It’s Christmas time, for fuck’s sake. Cancer never takes a break. Nor does Crohn’s disease, I suppose.

Here’s wishing a good night’s sleep to them, and to myself. Hoping for speedy and optimal test results, and adequate insurance coverage.
#fuckcancer #fuckcrohn’s  #empathy #livingwithit

I realized some time ago that my last blog was posted November 25th, 2014. Just another sign that 2015 has been slipping away in a haze of elder parent care, career change, parenting, and oh yes: let’s toss a bone to my struggling marriage. Somehow after 17 years of Nuptial Bliss… chronic illness, encroaching perimenopause, and generalized malcontent have finally ended the Honeymoon.
I took a social media break in an inept attempt at gifting myself more time for Self Care & Reflection. I do find that in life, just as in caregiving and airline travel, one cannot care well for others for any extended period of time if some semblance of Self Care isn’t practiced.
While on some level I may have done a good job tending to my patients, my elderly father and my teenage son, the 30 lb weight gain paired with my smoldering rage, painted another picture that neither my husband nor I were enjoying.

It wasn’t so much that I was overwhelmed and unable to find joy in reading about the happiness & celebrations of others, but that I was overwhelmed unable to find my own joy.

I’m not blaming any one person or event, but 2015 has been a year in which I have often heard Lucinda Williams in my head:

You took my joy
I want it back
You took my joy
I want it back

During my “break” there was a little Self Care (extra naps), but little written proof of my Reflection. So here, now, I present my return to writing, my return to finding the joy in this, The Hardest Season of the Year for me…

The Early Days

1972. Parents were still married, though not for long. I had had my left kidney successfully removed at UCSF earlier that year. Fritz still had an open heart to his odd little sister, and I had my first Familiar, in the form of a Siamese cat who had been sleeping with me since I was in a crib.

1974. Parents divorced; the first of many driving trips to Oregon to spend holidays with Bob King’s family. Our father’s people: people who loved sports, and card games, and thought I was the wee queerest little imp in the world.

We would drive from the Bay Area to Bend and/or Portland in Bob’s red 1969 VW Squareback. Mom would rage, cry and be generally inconsolable for several days prior to our departure. Fritz hated those trips; for several reasons, I am sure.

*Note: Bob still has (and wears), this White Stag winter coat. I have a photograph of him wearing it in Red Square, Moscow with Nadia (aka The Cold Russian Wind, aka My Evil Russian Stepmother).

*~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~*

Expectation Management

1979, Berkeley. This was Bob King’s daughter, Kristin Applegate King, at age 10.

*Note: There was no hyphen in the name yet; my last name was King, my father’s last name. The middle name given to both me and Fritz was Applegate, our mother’s maiden name. Mystery solved for those of you who have wondered what the hell that was all about. One of my favorite life moments was during the summer between high school and college. I went to the Social Security Administration office to drop my middle name, and hyphenate the surname to Applegate-King. I had my ID, and my personal check made out for $25. The guy at the office looked over my documents, looked at me, then asked “What are you, one of them ‘Women’s Libbers?'” I keep waiting for the opportunity to meet Gloria Steinem and share this memory with her…

Our parents were solidly, ferociously, spitefully divorced by this time. Alternating years were spent with either the King families in Oregon, or with our mother’s parents nearer to Berkeley.
My maternal grandparents were 1) an unapologetic atheist, born to a non-practicing Jewish mother in 1899, and 2) an agnostic from Canada who was in fact an atheist who felt that agnostic was just a more polite term.

Perhaps needless to say, there were never any visits from Santa. Nary a one. No Cookies left out for him, nor carrots left for his reindeer, so really, who can kvetch? My grandmother Esther made a wicked good apple pie, so that’s what really matters to me during the holidays: pie.

*~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~*

They Melted Her Cold, Cold Heart

2002. Bend, Oregon.

My husband, the inimitable Mr. Blitch, grew up on a farm in Northern Florida. And Santa, I’ve been told, made numerous visits to the Blitch Family home. Despite the warmer climate, Santa and his reindeer would come. The cookies and carrots were eaten, and Santa’s actual presence was undeniably evidenced by sooty boot prints and snow and ice found on more than one occasion near their fireplace.
(Nurse-speak: Santa. AEB: cookie crumbs, hoof and boot tracks, detritus from The North Pole.)

Mr. Blitch and I married in the late 1990s. We were both potters, we were both in better health, and our shared passion for art and Golden Retrievers fed our fire for each other.

On Thanksgiving morning of 1999 (“Magic Stick Day”), we learned I was going to become a mother of a Blitch. I knew then, that my life would be changed in astounding ways. What I could not anticipate however, was that Christmas would also never be the same for me. There was no way I could be prepared.

Changes and Losses

My childhood home in Berkeley was sold long ago, but my father held onto his Marin County condo until just this last year. Together, we packed up and sold the home he had purchased when I was 5 years old. We spent the very last night there, amidst a small pile of boxes, and on New Years Day I drove him to his new home here with us in Oregon.

3 months later, we received word that both my Uncle Frank and Aunt Donna were in the last stages of their respective battles with cancer.
Frank was dad’s elder brother, Donna had been a high school classmate of theirs in the tiny town of Marcola, Oregon.
Donna and Frank were both still living at their home in Bend, neither able to care for themselves or each other any longer.

I’ve been an oncology nurse for 8 years now; this was the first time I had been called upon to bring my skills with Palliative or End of Life care into practice with family members. Not just once, but twice. Donna died on March 3rd. On March 18th, I spent the night with Frank on his 83rd birthday; he was at St. Charles Hospital that night. We transitioned him to Hospice, and he died not long after, on March 31st of this year.

March 2015. Bend, Oregon. This was Bob & Frank a few days before Aunt Donna died. Frank came to me that night after I had taken Bob to a motel to rest. I was sleeping on the floor next to Donna’s hospital bed in the family room. She had lung cancer, Frank had bladder cancer. He woke me up and said he wanted me to help him pursue his right to Oregon’s Death with Dignity Act.

In the end, as in many cases, this was not necessary; or perhaps I should say his disease progressed too quickly, and we didn’t get to the point of seriously investigating this option.
In my years of working as an oncology nurse, I have learned that often simply having that conversation with a trusted family member or medical provider can be empowering and provide comfort to a person. Cancer takes one’s power away like no other force.

My dad and I have been been in a strange state of shock and sadness for a year now. In his words, “It’s just too much. Too much all at once.”

So this year, I’m looking hard for my inner Elf. My dad needs me to be that person, my son needs me to be that person. And Mr. Blitch, well, he needs and deserves his Happy Elf Companion and so much more.
I’m working on it, guys.

*~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~*

My husband drew this beautiful bird for me last night.
I was in bed, with a fever, and my whole family was in disbelief that I have shingles again.
When I say again, I mean this is the 4th time in 12 months that I have had shingles. It seems too absurd to be believed, and yet, it is the truth. My truth. I have a crappy immune system. There are good weeks, and not-so-good weeks.

This Thanksgiving, I am struggling with The Bitter Nurse Apple. The week of Thanksgiving is “supposed” to be a week of celebration for me. You see, after years of nasty medications for Crohn’s disease, painful injections, expensive diagnostic tests, weekly acupuncture, on and on… I began the SCD diet just before Thanksgiving of 2011.

The results were amazing: within 2 weeks, I was pain free. Completely symptom free within 2 months. I astounded my  Gastroenterologist by successfully going off all my meds. I felt on top of the world. I’ve known all along that “remission is not a cure,” but remission was certainly good enough for me. I felt invincible: I had survived 3 years of hospital work through multiple candied holidays: Halloween x3, Thanksgiving and Christmas x 3, New Years and Valentine’s Day… you get the idea.

I had turned myself off of chocolate, and donuts, and bagels, and all the other sweet or starchy delights of the typical American workplace break room. And yet, this summer, I discovered it was not enough. Ultimately, that crappy immune system reared its ugly head. The shingles, the Crohn’s flare.

Crohn’s disease is not caused by stress, but stress certainly can be a trigger. I am at a point in my life where I cannot eliminate stress. Daily work with cancer patients, mothering a sweet and sometimes overly tender teenage boy, tending to the needs of a beloved octogenarian parent. It’s really nothing special, it is in many ways “just life,” but my body keeps reminding me that it is too much.

(Me and Bob King, on his “planning trip” to Portland recently. I look so freakin’ weary in this photo.)

After a week in a lovely private room at the hospital where I work this summer, the colonoscopy and other diagnostic tests revealed that some fairly serious damage was building up. So back on meds I went, feeling defeated, but determined to return to full time work, and to full time life.

The med itself seemed fairly innocuous. It’s a pill form of a low dose chemo. So no painful injections, no hideous welts on my flesh. I have my labs checked every 2 weeks to make sure my blood count and liver function are normal. I was settling into it over the months, when I gradually noticed I was losing my hair. I was hoping it was just a natural part of aging. But by the time I had completely clogged the shower drain multiple times, and then I noticed that my braids were getting skinny, I caught on. So here I am. Trying to stick with an extremely strict diet that I *know* has helped me, but nonetheless is not a cure. Trying to accept the fact that for now, I need to stay on this med.  I am not fixed. I am tender, and vulnerable to the slightest of pitfalls, and it infuriates me.

I hate being Harrison’s Sick Mamma. I hate being the woman with a bottle of Imodium in her bag and extra underwear in her desk drawer. Just. In. Case. I want to be a role model: Nurse Apple, the SCD nurse… I believe so much in the power of food. I have seen and experienced so many positive changes in my own body, and in the bodies of all the children I know with IBD.

I also know how exhausting it is. It is never-ending, and isolating. It is time-consuming, and can feel futile. The victories are sweet, but can be tenuous.

So I’m giving myself the 3 year celebration. I’m calling it a Celebration of Improved Health. I wanted it to be a triumphant Celebration of Good Health. But it just is, and I will celebrate what I have. And more importantly, I will persevere.

Here’s to my support team. Love you. 

As I was struggling with the Top Ten Things that were making it difficult to enjoy my spontaneous coastal weekend with my son, this fantastic restaurant check helped steer me back towards sanity:

“EAT WELL, LAUGH OFTEN, LOVE MUCH, THANK YOU.”
And, as a bonus, I was able to enjoy an SCD meal. I adore restaurants that are happy to adjust their menu offerings to accommodate my nutritional needs.

But back to the weekend, and the Top Ten lists.
Lately, I seem to repeatedly keep setting my personal bar too high. At 5 foot 1.5 inches and rapidly shrinking, it should be no surprise that both physically, and metaphorically, I can’t reach the bar.

My son has just started his Freshman year in high school. I work full time in a busy Radiation Oncology clinic, and my husband works full time in his pottery studio, plus 3 day weekends at a large, not very quaint hardware store for shits & giggles.

Inevitability, when my weekend rolls around, I decide I’m going to transform into Merry Maids, Mary Poppins, Weekend Warrior, Mountain Rescue, and mighty SCD Blogstress, as in one fell swoop.
Two weekends ago, HH and I went to Ape Caves near Mt. St. Helens. It was physically challenging; way beyond my normal comfort zone. 2+ hours of underground cave bouldering, dark, damp, with boulders up to 8 feet in height. We were within a half hour of our journey’s end, when I found myself part (well, half, exactly) of a 2 member RN rescue party in the depths of the cave. I heard there was a man in acute respiratory distress, about 1/3 of the way back from where we had come. One advanced outdoors-dude was scurrying out to call for emergency support, but I was needed to head back down to help. The gentleman was visiting from out of state, and had had no idea upon entering the cave how strenuous the hike actually was. He had asthma, and had forgotten to bring his inhaler (an omission for which I’m sure his wife may have killed him for, once they finally got out.)
Long story short: with no access to cell phone service, and no quick way out, the other nurse that happened to be in the cave and I got him out safely, with no tools other than breathing techniques and calming words.
End result for me: the miniature nurse whose boss calls her “Tinkerbell” got to spend an extra 2 hours below ground, wondering if there would be a Happy Ending or not. Not Fun. Not glamorous. Simply, Scary as Shit.

Fast forward to the next weekend:
One of the other MDs I work for had reserved a yurt at Fort Stevens State Park, near Astoria, Oregon. He was unable to use the yurt, and the reservation was going to go to waste, so I decided to pay $53, take HH, and try for a spontaneous Round II weekend.
One night in a yurt, Friday after work, and then a tent campsite for the next night.
I got a used bike rack, and borrowed Mr. Blitch’s truck, since he’d be working all weekend and was unable to join us.
Preface: Last time I rode my bicycle, I hit a TriMet Max line track and went ass over teakettle. But I was determined to not be saddled by my fears.  And I wanted to take my kid on an adventure. And so off we went, with the Blapplegate Family travel curse snapping at our heels.
Here is the list of The Top Ten Things That I Tried to NOT Let Ruin my Weekend with My Son:
1) Nasty e-mail from a manager I rarely see, for working 38 instead of 40 hours without prior managerial approval.

2) E-mail from my sibling, a person I am all but estranged from who has never once, in 7+ years, participated in any of my Crohn’s & Colitis Foundation Walks or fundraisers. He had included me in a group mailing, inviting me to donate to the Alzheimer’s Foundation walk on behalf of his best friend’s mother. (A worthy cause, to be sure. But the sting was undeniable.)

3) Portland traffic: 90 minutes just to clear town and reach the coastal highway
4) Locked out of Yurt due to late arrival (= late night panic)
5) Truck didn’t start back up at first, as we went in search of Park Ranger to let us into Yurt (= more late night panic)
6) Urinary Incontinence
7) Discovered at midnight, once finally inside yurt, that I was drinking a variation of an SCD legal Hard Cider that actually contained caramelized sugar. GASP! (No worries, it was grabbed from my lips and thrown out by my over zealous teenage son.)
8) Worry about my upcoming colonoscopy: my 4th, to be performed under deep sedation on my day off the following week.
9) Awakened at 0230, by red lights and loud engines emerging from the coastal fog… 3 Emergency Response vehicles down at the Yurt Village restrooms… luckily, they were not there for me, nor was I involved in any way… but really? Really?! Does my mere presence bring mishap to others?
10) Night Two, tent camping: Trapped between 2 gigantic RVs and a Hillbilly Family Reunion at the “camp” site. Lights, microwaves, generator motors throughout the night. If HH would have let me, I think at that point I would have bummed a cig and a Miller High Life and joined the fun.

Now, here is the part in my adventure where my faith in the National Park Service begins to be restored…

If a gal like me can overcome her fear of heights, and drive out of Astoria over the Megler bridge, the reward on the Washington State side is the Dismal Nitch!

And then, then there was Wednesday.
The words were not really flowing, but there is always a list in my head.
And so here is that Top Ten List:

Good things that happened on Wednesday September 24th:
1) The new *Pineapple* flavored GoLytely worked like a charm: no 2nd gallon needed.
2) HH got up at 0500 to keep me company and watch a couple old Frasier episodes between mad dashes to the can.
3) OHSU continues to ROCK: fantastic nurse, GI doc, and anesthesiologist:
as per my request, I felt no pain this time. Even the IV was perfect and left no bruise! 
4) Funny message from my boss in response to photo below (left):
“Q sign, What a Gome.
Loved your colonoscopy video on OHSU broadcast
Get some rest!!!”
5) Biopsies pending, but the gnarly, ulcerated, red & inflamed colon from June’s scope was much improved. Small intestine still with moderate disease activity, but still, improved.
6) My ever-doting and loving Mr. Blitch, fed me, napped with me, and got a pedicure with me to help me heal and relax after it was all over.
7) Lucky #7, Lucky me: sweet messages of support from friends near and far.
THANK YOU. It makes a *HUGE* difference.
8) Big fat gallery check from Blitch’s new gallery.
9) Despite everything that our family has going on, HH had another good day @ Cleveland High School. My faith in Portland Public is slowly & cautiously being renewed. They won’t see this, but Huge Thanks to his amazing new teachers.
10) umm… there must be one more!
Oh, yes! (Photo bottom right) While all this was happening, my kiln (the kiln that I let Blitch use) was bringing a new load of experimental glaze tests to beautiful life. Keep on rocking, love!

   I had not seen this sad little chart before this morning.
I was searching for a photo, minus the classic ulcerated & inflamed intestinal mucosa shots, that would help to illustrate my 0500 today.
Crohn’s disease is insidious by nature. This I know intellectually, academically, historically. And yet, time after time, this disease brings me to my knees, and I am brought back to this bewildered, painful space:
  Really? Really? I repeatedly ask myself, my body. Then I move to: “Oh, holy hell! What did I do? What did I eat?!” My mind frantically searches through every morsel of food, every sip of fluid from the previous days… what did I do? I’m a nurse; I, like anyone else, desire a solution. A fix, preferably a quick one. I just started reaccumulating my sick and vacation hours at work, for pity’s sake!

But I know, in my heart, in my educated nurse brain, that I did not “do” anything. This is not a punishment for my snarky nature, this just IS.

Yesterday was my Wednesday off. I woke with some ankylosing spondylitis symptoms that I’ve been struggling with: hip pain that can make it difficult for me to walk. But I’ve been able to manage that with stretching and tylenol. Not an enjoyable addition to my crappy body’s needs, but manageable.

So this morning, I rise at 05-something in the wee hours. I head to the kitchen to start some eggs boiling, and notice that I have some painful indigestion. Notice that my skinny belly is hard and distended, swollen so high that it’s pushing up into my ribcage. I shrug, I think, huh… that’s odd. But my goal is to get food packed and get a shower, catch the 0615 bus to OHSU.
I head into the bathroom… and within moments the storm unleashes.

In the end, some of the exploding insides have made their way to the outside, and I’m lying on the bathmat, sweating with a fever. I have now 7 of the 9 symptoms listed on the sad little toilet-man chart above.
No work for Nurse Apple today.

Well, the work of tending to the insidious lurking beast that resides somewhere between my mouth and my large intestine.
My little inner growling demon. Is it a he? A she? Or is it simply the armies of inflammatory cytokines? In cancer, in autoimmune diseases, we always used to say “Blame it on the Cytokines.”

Either way, just like blame and grudge holding in larger life, it doesn’t help with my disease(s).
Today I will sleep, I will drink fennel tea. I will let my husband dote on me. I will try, as I tell my cancer patients, “try to be gentle on yourself today.”