Saturday, November 4, 2017

One Thing at a Time



The Hurry Sickness
Ah fall, a time for homecomings, baseball play-offs, and everything pumpkin but this year I’ve been noticing a disturbing trend (yes, even more disturbing than everything pumpkin.) I was shopping in a craft store, mid-October mind you, and was shocked, shocked I tell you, to find Halloween and fall decor was already marked down 50-70%! Why? Apparently, to make room for the tidal wave of Christmas merchandise that had been stealthily creeping onto their shelves since September. And now it appears November 1st is poised to take the place of Black Friday as the kick off for Christmas. It’s like Thanksgiving is being erased from existence. Why the hurry?

Spiritual teacher Sri Eknath Easwaran believed hurrying was actually a sickness. He claimed hurrying only makes our lives tense, insecure, inefficient, and superficial; living faster and faster gives no time for inner reflection or sensitivity to others.  https://en.wikipedia.org/wiki/Passage_Meditation

Hurrying as a sickness is an intriguing concept. As I reflect on Sri Easwaran’s proclamation and my own habits, I think about what happens to me when I’m in a hurry, when my body is in one place and my head is scattered about. Nothing gets done well, that’s for sure.  And how does hurrying feel in my body? Frustration will arise and my jaw will tighten, muscles start to tense, head begins to throb, and my chest feels heavy. In other words, not good; maybe even, oh I don’t know… like I’m sick?

One Pointed Attention 
Is there a cure for The Hurry Sickness? YES; slow down and practice the art of One Pointed Attention (training the mind to give full attention to one thing at a time). According to Easwaran, slowing down and setting priorities can reduce the stress and friction that is caused by hurrying. Slowing down also contributes to the attainment of calmness of the mind and personal growth. One Pointed Attention helps to deepen concentration, a basic requirement for achieving any goal.

Staying present has been one of my struggles, especially since chronic illness has entered my life. I’m always catching myself remembering and dwelling on the past, as well as imagining and worrying about the future. I wondered where in my life I could use a little one pointed attention. Well, obviously everywhere but so as to not feel overwhelmed, I decided to start with my morning cup of coffee.

Just me and my Java
I do love a good cup of coffee but tend to multi-task while drinking it thus never really appreciating it. Many mornings find me at my computer with a cup by my side. Often times I reach to take a sip only to find it tepid and undrinkable or worse yet, the mug is mysteriously empty! This got me thinking, what if I gave my full attention to my cup of coffee and took the time to actually enjoy the act of drinking it while doing nothing else? And that is exactly what I did.

As I sit outside on the deck, cup in hand, I feel the warmth of the brew radiating into my palms. I close my eyes. The steam gently caresses my face as I bring the mug to my lips. The smokiness of the aroma makes me grin. I take a sip and make a yummy sound. As I open my eyes, I gradually become mindful of my surroundings. The chirping of the birds and the rustling of the leaves as the squirrels forage and play tickles my ears. I let the trees cast a spell on me as I watch them sway in the breeze. I take another sip. I become aware of my breath, it is slow and even. I feel fantastic!

I am ready to take on the day, one thing at a time.


Friday, October 20, 2017

Putting the 'special' in Specialist



I have used this platform to address the ups and downs of living a chronically ill life. While my last post was rather bleak, this post tells a different story. Good doctors are out there and if you’re lucky, you just might find a great one!

My gastroenterologist recently told me there was a good chance I could go off medication! I was floored as I thought I’d be taking pills for the rest of my life. He explained to me the recent research suggesting IBD patients who have been in remission for five or more years and have stable lab values could most likely stop their medication. This doesn’t mean I am cured; there is always the chance of a flare but I’ll take it. He told me he wanted to plant the seed and for me to think about it. He would like to wait until my next colonoscopy and if all is quiet we can proceed.

I know he did not make this recommendation on a whim. He is Mr. Science and does his homework; if something is not in the literature, he doesn’t have time for it. So if he believes I could safely discontinue my medication, I trust him with all my heart and soul. Why so much faith? Here’s a bit of our back story that should explain things.

I had been living with Crohn’s for four years when we met.  I was in the midst of a wicked flare and my doctor at the time was puzzled so he sent me to an IBD specialist at a university hospital. Our first appointment was over an hour long. This new-to-me doctor took copious amounts of notes (by hand) as I dictated the detailed account of my medical history. I remember leaving the appointment with a clear understanding of his plan and more importantly, feeling listened to and cared for.

It’s been nine years since that first appointment and he is still amazing to me. He has seen me at my worst and best, answered any and every question I’ve ever put to him, and has tolerated all my nonsensical chatter about what I find on the internet (with the occasional eye roll of course.) He even knows of Neurofibromatosis and is always careful to consider it when addressing my health and potential treatments.

So that’s why I trust him, he listens and knows me, Kelly. He also gives me something so vital to my well-being that no pill or procedure ever could: peace of mind.


Saturday, October 14, 2017

Dear Physician: See Beyond the Diagnosis and See Me



Osteoporosis and I recently celebrated our six month anniversary. We commemorated the occasion with a follow-up visit to the endocrinologist. However, two weeks prior I received a phone call from the office informing me the practitioner I saw during my last visit had left the practice and I would be seeing someone named Katie. Fantastic!

Katie walks in and looks to be about 12 years old. I mentally call myself out for making judgements and try to keep an open mind. She asks what questions I have regarding the Prolia; I offer my concerns, fears, and thoughts. For one, people who have weak immune systems or take other medicines that affect the immune system may have an increased chance of having serious infections with Prolia. When I started to tell her I had discussed it with my GI doctor, she interrupted me.

“Well, Crohn’s really wouldn’t be an issue; we would be more concerned about someone like a transplant patient that would be taking immunosuppressing medication.”

I quickly told her, “Well, that’s me.  I take the same immunosuppressant drug that transplant patients take! So …?”

“Like I said, Crohn’s is not an issue.”

And my plan of eating better, taking my supplements, being more active, and rescanning in a year?  Katie squashed it like a bug stating my insurance probably wouldn’t pay for another scan so soon; I would be wasting time.

While Katie claimed to understand my stance, she put up every roadblock she could as she insisted the osteoporosis would only get worse, best to slow it down, start the medication now. She also did her best to scare me (my perception) as she spoke of the dangers of falling and risking a fracture. Her big whoop-di-doo advice? Find someone else to shovel snow this winter and use lots of salt on my driveway and sidewalks. I thought, “Good lord, does she think I’m an 80 year old widow?!”

As a parting gift, she addressed my elevated glucose and the risk for pre-diabetes. She recommended I cut back on carbohydrates and rattled off a list of the usual suspects. When she mentioned rice and corn, she tagged on “I know you don’t eat those.” In the next fleeting seconds, I thought to myself, “What the hell does she mean by that? Is she making assumptions about Crohn’s and diet… should I school her? Nah, I can tell she already knows everything.”  I nod in agreement.

As I am leaving I tell her, “I’m not being cavalier and careless; I love medicine, it has saved my life. I just want to make sure I have a solid understanding of my situation and the available options before I am injected with yet another medication.” She reminds me again of the many other people who tolerate the medication just fine.

Six months ago, I left this office in tears. Today I left feeling frustrated. I didn’t feel cared for and I certainly didn’t feel listened to. So I’m digging in, there is no way in hell I’m taking this medication until I read more about it. Yes, I realize there are people who have taken the injections and have had minimal or no issues but to quote one of my favorite villains of the cinema, Miss Lina Lamont, “People? I ain’t people!” And I’ve decided to search for a new Endocrinologist practice. Not for a second opinion per se, I know I have osteoporosis; I would like to have an honest conversation with my healthcare provider, one where there is listening and learning and not a lecture.Why is that too much to ask?
Photo credit: http://counsellingtutor.com

Sunday, September 17, 2017

Words



Words are curious creatures aren’t they? They can “cut like a knife” or be “music to our ears.” When someone we love speaks sweetly to us, we often find ourselves, “hanging on their every word.” Since my Crohn’s diagnosis, I’ve heard plenty of words and more times than not I’ve deemed them to be of the “cutting” kind.

From Co-Workers:
1)   “I wish I had Crohn’s. Just for a week though, then maybe I could lose some weight too!”
2)   “You look normal now, never lose that much weight again, you looked terrible.”
3)   “Should you be eating that?”, “Don’t you think those vegetables will rip you up?”, “Maybe that’s how you got Crohn’s in the first place.”

From The Always Too Jolly Nurse at My Gastroenterologist’s Office:
4)    “If you’re gonna have Crohn’s disease, Crohn’s Colitis (of the colon) is the one you want.”

Random Favorites:
5)   “I thought people with Crohn’s were skinny.”
6)   “Have you tried…?”
7)   “Are you sure you have Crohn’s? I think you may have been misdiagnosed because you don’t look sick.”

At first listen I considered these comments, these words, to be insensitive and uncaring. I thought, “How dare you say something so thoughtless, so mean… and to a sick person!” But after some reflection, I questioned whether or not these comments were in fact “thoughtless and mean.” Maybe and maybe not, I can honestly say I have no idea how they were intended to be heard.

So I ask you dear reader, how much weight do words truly carry?

The answer is none, until the listener decides.

I can chose to remain upset or I can chose to believe the comments I’ve heard were born out of ignorance and misinformation. Spoken by people who thought they knew more than they did. And if I look a little deeper, these comments may have come from a place of caring and concern and the words that came out of the speaker's mouth were the best they could come up with.

The knee-jerk reaction for remedying such misinformation is usually, RAISE AWARENESS!

Here’s an idea, instead of raising awareness for every cause, every disease, and every disorder, what if we worked on raising awareness of ourselves? What if, before we opened our mouths to speak, we paused to ask ourselves: “How will my words serve?”

Need help? Here are a few suggestions for navigating the waters of conversation from one of my favorite books, “Dancing with the Ten Thousand Things,” by Tom Balles:


Become a better listener: Do your best to listen. Refrain from thinking of what you are going to say in response. Resist the urge to fix, recommend, or suggest. Let your listening shape their speaking.

Ask open-ended questions: Asking, “What’s going on?” will encourage someone to open up more than accusatory questions like, “Should you be doing that!?”

Create partnership: Ask your friend or coworker (chronically ill or not) for specific ways you can become a better partner (e.g. what helps them laugh, what motivates them in moments of discouragement.) Adopt and act on their answer for the sake of the relationship.


So if you are feeling misunderstood, speak up. And know that there will always be people with preconceived notions that might never fully understand your situation. The beauty is YOU get to decide if the conversation is worth having and what weight the words will have.
Photo credit: iStockphoto