Flexing My Psychological Muscles

Happy New Year

In February of 2018 I received an IV infusion of the osteoporosis medication Reclast. As the year flew by, I tried not to think much about it. I saw my doctor earlier this year and she had good news for me. The results of my latest DEXA scan showed significant improvement in my bone density. How much improvement you ask? Enough to prompt her to remove the word ‘Osteoporosis’ from my chart, that’s how much! She casually stated, “Well we don’t need this in here anymore” and with a swift click of a mouse, Osteoporosis became a memory.

Oh, and the news got better, no IV infusion this year! A medication vacation was what she called it. But there was a catch, Osteoporosis could come back. I would still need to mind my diet and exercise. I would still need to repeat all the testing next year. There was no mention of a permanent medication vacation. Of course there wasn’t.

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Is That All There Is?

My doctor had given me fantastic news and a medication vacation so why did I feel like there should have been more? Simple, I want more. I want my medical life to be easy. Actually, I want it to go away but that’ll never happen. That’s the rub with chronic illness, it’s always there. Sometimes my illnesses are loud and crazy and other times they are more of inconvenient annoyances. Regardless of my health status, I’m constantly attending to my medical life.

Currently, I’m in the inconvenient and annoying phase. I have been off my Crohn’s meds for nine months and counting. I won’t have to think about osteoporosis medication for another year. On the surface it would appear I’m doing fairly well. Maybe so, but I still have appointments to make, blood to get drawn, and pee to collect. Sometimes I wonder what I would give to hear the words, “You’re all better and free to go, you never have to come back.” Sigh.

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So What, Now What?

It’s easy to get stuck in the cognitive distortions of ‘all or nothing’ thinking. Negative thoughts are going to come and I have discovered it’s best to just let them in. Not to accept them but to challenge them! When I find myself wishing for a different life, I see it as a reminder to flex my psychological muscles and use some adaptive thinking. I pause to ask myself questions like:

Is this really true?

What is the evidence?

Is this helping me right now?

Is there another way to look at the situation?

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New View

Running around for testing and treatment is not the most glamourous use of my time but it is not the only thing I do. I’m able to work in my yard, go out with friends, and get to the gym every so often. I’m also thankful to be ambulatory enough to drive myself to my appointments as well. And while I’m not cured (and might never be); my health status has improved to a point where I’m free of all medication. If that's the pay-off for all my running, I’ll take it!

“Everything can be taken from a man but one thing… to choose one’s attitude in any given set of circumstances…” –Victor Frankl

Kelly vs. the Pill Case

Previously on WDTM

Last fall when my GI doctor brought up the subject of stopping my Crohn’s medication, I was skeptical. I thought chronic illness required chronic medication. Well, that’s not always the case. Recent research suggests IBD patients who have been in remission for five or more years and have stable lab values (like me) could most likely stop their medication with minimal risk of a flare. He told me to think about it, and we would discuss again after my colonoscopy in the spring.

Fast Forward One Year

All went well with the scope (the-patient-is-fine), we revisited the subject of stopping my medication and I decided to go for it! I relegated my pill case to the junk drawer and have been medication free for the past four months. Last week at my follow up appointment my doctor informed me that all my lab values looked great, vitals were good, and he saw absolutely no signs of active disease! He said I could continue to be medication free and wouldn’t need to return or get labs drawn until April of 2019!

As I walked out of the office, a mix of emotions came over me. Of course I was thrilled to receive a positive report regarding my health and yet I was a wee bit scared of my new found freedom. No pill case to fill and no blood draws or office visits, is this heaven? As I drove home I wondered, “Am I allowed to feel this way, feel normal? Am I still ill if I no longer have a pill case to fill? What if I flare?” Oh boy!

Be Grateful For Whatever Comes -Rumi

Upon returning home, I took some time to process the thoughts and fears running through my mind. I determined my life and health status are not defined by the number of pills in a case or trips to the doctor. I am more than Crohn’s. So, hell yeah I’m allowed to feel normal and savor every minute of NOT filling a pill case or seeing a doctor. Yes I’m still ill; though Crohn’s is quiet, I have other health issues still in need of tending. And if Crohn’s decides to get noisy, I’m fine with that. I am content to enjoy my medication free moment for however long it lasts. And if I need to retrieve my pill case, I know exactly where to find it.

The Best is Yet to Come

The Wake Up Call 

A few weeks ago while chatting with a dear friend; the subject of employment eventually came up. We discovered, neither one of us is working in our chosen field (nutrition) and neither one of us was too bothered by it. Que será, será was the sentiment we shared. My friend then doubled down on her ‘devil may care’ attitude and boldly proclaimed, if she is not gainfully employed as a nutrition professional by the time she hits 60 (she was 55 at the time of this writing) she would not renew her registration and licensure. My first reaction was, “Are you crazy?! You busted your ass for that, why would you throw it away?”

She explained she didn’t see any value in spending her energies and money to maintain her certification when she would be so close to retirement age. I began to understand her point of view but still thought to myself, “Well that’s fine and dandy for her, I will never give up my creds!”

As days passed, her words weighed on my mind. The more I thought about it, the more I started to think maybe I was the crazy one. I gave up my search for a paying job a few years ago, why on earth was I still maintaining my professional credentials?

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When We Do What We’ve Always Done

My status as a Dietetic Technician, Registered (DTR) has been a part of me for almost half of my existence. I have attended seminars/conferences, taken college courses, and taken part in webinars. All in pursuit of the 50 continuing education credits I need to accrue every five years in order to stay in good standing with my credentialing board. Oh, and it’s not enough to participate; I must also keep detailed records of my activities and document everything in a Professional Development Portfolio (PDP).

It’s a substantial investment of time and money but I always felt it to be worth the effort if it meant retaining my status as a credible nutrition professional. I guess after 25 years, it became a habit, one I never thought to question; until now.

A False Sense of Security

Another reason for keeping up my registration is a case of the “what ifs.” What if something happened to my husband, what if I had to get a job? I always took some comfort in having a professional title in my back pocket. But as the old saying goes, “Use it or lose it.” I haven’t been employed for over six years. Sure, I’ve kept up on current events and trends but I have no recent field experience. “Who wants to hire the old rusty diet tech? Anyone… Anyone… Bueller?”

A Sense of Purpose

Maintaining my DTR designation means I can remain a member of the Academy of Nutrition and Dietetics (AND) and enjoy all the honors, rights, and privileges that come with said membership. I recently wrote a blog (sense-of-purpose) about how entering the Academy’s Food and Nutrition magazine recipe contest provides me a sense of belonging, community, and purpose, one that transcends my everyday responsibilities.

In that post, I claimed I would never give up my DTR status (twice!) I believed it when I wrote it, well never say never!

Cut the Cord
Over the years, I have convinced myself I can’t do anything else, be anything else. I am a DTR. My credentials give me, well credibility. Without them, what would I have going for me? I always felt letting my credentials expire would limit my options. As I reflect on the conversation with my friend, I realize the limiting factor is the fear of letting go.

I must remember this important fact: There is more to me than my professional self.

Maybe letting go will free me to consider possibilities I would have never dreamed of otherwise. Another recent blog post of mine was about feeling cluttered and creating space (the-gift-of-pain). I think it’s time to consider my own words, let go of ‘Kelly the DTR’, and make room for what’s coming next. I have no idea what it could be. Isn’t that exciting?!

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