An open letter… to those who are uncomfortable with me, with my Crohn’s:
This evening, I managed to offend one of my favorite neighbors.
It is no secret that I have long possessed an uncanny ability to offend with my honesty.
I was asked to sign a petition to close our street next week for our annual block party. I accepted the clipboard, and as I signed, said I was happy to sign, but doubted that I would be attending this year.
Here, a wiser, more socially skilled person would have either stopped talking, or inserted a little White Lie.
But I can’t do White Lies. They are, by definition, still lies.
And, with my luck, and aforementioned lack of social skills, I inevitably, will be the person who gets caught in one.
So, when questioned by my lovely, innocent neighbor as to *why* I wouldn’t be attending, well… The mouth opened, and the truth came out.
I work ten hour shifts.
I get up at 5am, I schlep to the bus with food for 2 meals during my workday.
In August, I schlep home in 80 to 90 degree heat, around 5:45 or 6pm. Via Tram, via bus, via foot. I’m hot, I am tired, I am schlepping.
I can’t ever attend this party easily, because my 90 pound rescue dog Does Not Play Nicely With Others. The other neighbors have their dogs out, running around off leash, and year after year, on this first week of August National Night Out, my dog is locked in our house, barking his fool head off at the dogs and kids running freely in the street.
And then, the worst, most annoying element of my honesty: my food needs.
Corn on the Cob, chips, Beer, BBQ, salads with dressings, desserts. Typical, lovely, perfectly normal American party fare. None of which, absolutely none, can I eat.
So, in order to attend, I would have to do my schlepping, and my dog prepping, and then feed myself some gut friendly food, and then go hang out with my neighbors.
I love my neighbors. I really do. A great many of them. I adore them, and am honored to know them. But this year, I can’t bring myself to even pretend I would like to go to the party.

So there is my truth. A small sample of my annoying truth.
The open letter part, is this:
I am sorry Crohn’s is such a drag.
I am sorry I can’t join you in a cocktail or a beer.
I am sorry I joke openly about bowel function.
I am sorry it is such a pain in the ass (pardon, no pun intended) to invite me to your home for a meal, because you don’t know what I can or cannot eat.
I am sorry my weight loss and pain scare my husband and my son, and make us a less happy-go-lucky, less spontaneous family to hang out with.
I am sorry that when you see me after I’ve been in the hospital and ask how I am, I can’t give you the happy response you want to hear. I can’t say I’m all fixed, and I don’t have this disease anymore.
Chronic illness is a big drag. It is tiring, and it gets real old, real quick.

Crohn’s disease has taught me a lot about myself, and my new reality, my new truth. I may not handle it everyday as cheerfully or gracefully as I would like, but for that I am not apologetic.
Walk a mile in my shoes. Spend a week with some children with colostomy bags, feeding tubes, or blood in their stools. Hang out with some teens who take painful injections to their bellies or legs every week. Or the ones who miss school for IV infusions. Or a frightened parent of a child with Inflammatory Bowel Disease.
Then we can talk about that corn on the cob.
Sincerely, Krabby KrabApple.

Crohn’s disease is insidious in nature.
I have been off all meds, and controlling my Crohn’s with SCD (the Specific Carbohydrate Diet) since November of 2011.
Then, one of Life’s Little Detours Happened.
Here are a few snippets from my journaling while housed on the hill.

 Saturday 31 May, 2014

Adventures in Crohn’s: 
First official hospital stay related to this crappy immune disorder.
My body is in Storm mode. Shingles to Crohn’s flare: things have gotten out of control.
I’ll be here until Tuesday at least. Monday will be a colonoscopy under sedation. (My 3rd, and I haven’t even reached 50 yet.)
I’ve already lost 7 pounds, good thing I had some extra butt in reserve. By the time I finish the scope prep, I should be all elbows and angles.
(Although, steroid Moonface might kick in to balance that out.)
Thank you to all the friends & neighbors who are helping out with HH and the dog. And the Shane.

Sunday 1 June, 2014

3 hours sleep, a shower, clean mesh hospital issue panties, morphine, things are looking up!

Tuesday 3 June,2014

Woke up with a dash to the can and severe cramping… Even the tiny bit of food I attempted last night was too much.
Morphine on board, letting things settle. Maybe back to broth later this morning.
On the bright side, my noc shift RN was a new grad from UP.
I think she was about 12, but like all UP Alum, top notch care.

 Hard on my guys.

I’ve found the cure for Crohn’s!
Drink nothing but water.
Take high doses of steroids.
Quit your job,
Spend all your time sleeping with warm blankets in a quiet, dark room.
Easy !!

Part I: Tongue to Tuchus
Part II: Ileum and Ilium

Waking up to inpatient Day 5.
Time to attempt an update, despite the cloudy head.
Pain is lurking, worse always in the morning when the night meds have worn off and the guts want to wake up and play.
In the 7 years that I’ve been doing battle with my immune system, this is the first time my body has truly gotten the best of me.
The worst of the news is two-fold.
My CT scan revealed an advanced return of inflammation to my Crohn’s old nesting place : the terminal ileum, where there is now fresh inflammation, on top of old scar tissue. Now, I have involvement of the large intestine as well… A new thing. Crohn’s can run its course from tongue to tuchus.
With this new advancement, I currently have the full meal deal.

The second part, is that the CT scan also came with a new diagnosis. I have something called Ankylosing Spondylitis (AS). Another autoimmune disorder, could be called one of Crohn’s unpleasant cousins.
AS is a form of arthritis than can ultimately cause some of the vertebrae in the spine to fuse together.
So now, I have inflammation and scarring in both my ileum, and my ilium (one is gut, the other bone).
It’s all too much.
We haven’t told Harrison about the new AS problem yet.
Working on getting the mamma home first before we dump any more frightening information on him.
And as always, our little Blapplegate Trio is processing this with no “family” nearby.
I even type the word family, with trepidation… It should be a simple word, but for me it is the most complicated.
So I send you all my thanks and profound appreciation. Our friends, coworkers, neighbors, have been filling our world with your warmth. You are making the unbearable bearable.

The attending Family Med doc insisted on taking this photo, he’s sending it to my gastroenterologist.                                                                                                   

A horrible experience, but I was surrounded by amazing health care professionals, and the love of my friends, neighbors, co-workers, and even my boss: Dr. Holland showed up every morning I was in the hospital, with his trademark dry wit, and gag gifts front the Plaid Pantry. (Hence the Twinkies and Energy drink above.)

Getting this blog really rolling, will involve quite a bit of sorting~cleaning~catching up for me.
Over the years I have stashed 4, maybe 5 beginnings of journals (paper form, of course) in various places: old backpacks, the underwear drawer, the bottom of the pile of novels in the bed stand.  Not to mention the gems I managed to get onto Facebook, usually at 0500 as I was waking up for work. I had wonderful intentions of compiling those snippets at some point into a more cohesive format.
Here’s a tease for you: chapter titles for the memoir, jotted down on a trip to Seattle. (And why, by the way, is it that I must be home sick, or on vacation, to find the time and space to write?)

I.  The Braid
II.  The Non-Gay Child
III.   Pianos, Plural
IV. “Affordable Therapy” (18 Tennis Balls)
V. Emergency Hemorrhoidectomy

So hard to find a place to start. I’ll have to channel my inner Julie Andrews and start “at the very beginning.” It’s all about the Applegates, Oregon, the PNW. I can’t seem to escape my roots.

Top photo is my grandfather, Lindsay Applegate. DOB 10.29.1899

Next photo is my son Harrison, with Lindsay’s youngest sibling and only brother, “Ap” Teddy Applegate. DOB 11.10.1918

Both Applegate brothers, as far apart in age and politics and lifestyle as they were, were scientists at heart. One an engineer, one a physicist and a boat builder. In between were 4 sisters, born between 1901 and 1909. My grandfather was unusually progressive for his generation; he believed in education for women and helped to put all of his sisters through college.

The legacy I inherited from the Applegate women was one of advanced education and pioneer spirit. These were the granddaughters of the Applegate children who had grown up on the Oregon Trail in the 1840s. Drive and perseverance were the norm and the expectation for these women, especially when presented with opportunity.  All 4 had Masters degrees, and a couple PhDs, in math and/or science. They taught in colleges, worked in research laboratories in hospitals, one was a “WASP” (Women Airforce Service Pilot) during WWII.

When I was in my twenties, I had a BFA in fine arts from The University of New Mexico, with a minor in European Art History. I was working part-time as a clay artist, part-time doing retail, or nannying, whatever paid the bills. And I always felt woefully inadequate as an Applegate. I had been raised primarily by my grandfather, and wasn’t sure he would have approved of my life as an artist, had he still been alive.

Fast Forward some decades.  My only living grandparent, Lindsay’s wife Esther Applegate, was dying.  My life took a new turn.

I was the family member who had the time, and much more importantly, the emotional capacity, to stay with my Grandmother during her final days.
She was under the amazing and transcending care of a group of Hospice nurses in Southern Oregon.
It was my introduction to the world of Hospice & Palliative Care. Little did I know that down the road that would become my new passion and career. But a seed was planted.
The nurses taught me about the normal biological changes that occur when death is imminent. The breathing patterns ~ how similar leaving the world is to entering it. (i.e. the breathing of a woman in labor, the breath of the dying. Full circle in the the most profound way.)

At the time, I was not a mother. But 10 or so years later, as I labored with my 9.5 lb son, I could really understand that connection.

I am so grateful for that time with Esther. There was a cot set up for me next to her bed. The last 3 days and nights of her life, I stayed with her. I held her hand, and helped turn her, and sang to her.

I have a terrible singing voice. Really, I can’t carry the tune to “Happy Birthday” or your most basic Christmas carol. But Esther was a captive audience. She was dying and I choose to think my presence was of more importance than my vocalizations.

I had recently seen the film “Reds” with Warren Beatty and Diane Keaton. The song “I don’t want to play in your yard,” which had been beautifully sung by Keaton in the film, was one my grandmother used to play on the piano when I was little. The song was stuck in my head, and as you can imagine, being such a terrible songstress, my repertoire was limited. I’m sure this was super creepy, singing this song to my grandmother like a lullaby of death. But there you go. I was the person that was there for her, and that was our song.

We were very close, Esther and I. I spent many long summers with her and Lindsay while my mother was working on her PhD. (Remember, there was a legacy, certain expectations for the women in our family.) The rest of that story has a place in another chapter: “The Braid.” It’s morbid as all hell, I promise. Just know that there are still certain drawers in my home that one does not want to investigate. Fair warning.

Going back to a Mothers’ Day post from 2013. Words were flowing, angst had taken a holiday.

4am reflections on my life as a mother…

This year, he’s taller than I am and has bigger feet. 
In many ways, he’s smarter than I am (with conceptual stuff, 3-D, solving Rubix Cubes, Origami master).
His piano playing is full of joy, and spontaneity. He can pick anything out by ear, my most recent favorite was the Downton Abbey theme song.
We both love math and science.
We both enjoy Simon Pegg tremendously. (Although I might be convinced to leave Shane Blitch for Simon, and I know Harrison would never.)
He consistently whips my arse in Rummy… I’ll claim some pride for this disgrace, since apparently I taught him well.
For, him, I am required to function daily in areas that are well beyond the limits of my comfort zone.
I lament the fact that he so rarely gets to see his extended family. I know I’m not a priority for my family, but it pains me that by extension, this is a lost connection for him.
He’s had some tough lessons at an early age. Bad enough for a child to have one parent immobile so often, but to have 2 parents with ongoing medical issues… that’s no party.
I’m sad that we haven’t been able to travel with him. But then I’m comforted by seeing him in the yard with his chickens, or walking his 90 lb labrador around the hood.
We Live-Large in this wee house. 2 huge men, and one little, shrinking mama.
I’m fortunate… that he begs me to play cards with him. That he loves coming with me to play Maj Jong on Monday evenings.
That we can go camp together, just us 2, and he’ll insist on setting up the tent site by himself.
I’m loving that he’s old enough to share some of my favorite movies with, at last.
Wondering if it’s close to time to introduce Scully and Mulder yet.
He comes with me when I do scary things, i.e. public speaking for the Crohn’s & Colitis Foundation. He’s my pep~squad.
I recognize so much of myself in this other person. But there’s also this outgoing, friendly, cheerful happy-go-lucky element that is foreign to me. That’s the Shane Blitch DNA influence. So, lucky kid. No one wants to be too much Applegate. 

So for each sadness or disappointment or frustration, my mothering and self-presevation strategy is to balance it all with being present, speaking my mind and my heart, and offering gratitude. So much sincere gratitude for being given the chance to spend time on this planet with this boy named Harrison.

Thoughts on mothering are never complete for me with out some Anne Lamott.
““Forgiveness is giving up all hope of having had a better past.”

I hope I can teach Harrison about compassion, and forgiveness, by experiencing those things for myself.