Monday, January 29, 2018

What is Normal?

Things have been on the challenging side lately, but my sense of humor is still fully intact. This is good since I use humor to get through those laugh or cry times. I am one of those patients....the ones described as medically complex, challenging, complicated, medical anomaly, etc.  The ones healthcare providers are not quite sure what to do with....or for. That is OK. I understand. I know I am hard to treat. I know there is no hope of cure, that I will never be "fixed." It is what it is. It is a part of living with multiple chronic illnesses, some of which are genetic.

I am known as the "less than 1%" or "outlier" among other things  Some physicians or other healthcare providers give up on me when they cannot help or are not sure what to do.  Others, openly acknowledge things are difficult to manage on their end, but they realize I am the one living with all of this.  We need an outside of the box approach as I clearly fit in no normal box.

What is sort of funny about all of this, is I have clinical training/background, have worked in clinical research. I know I am everyone's worst nightmare as a patient or research participant. I am the patient who takes time, trial and error, creativity.  I am so far outside of normal, that I'd be an outlier and skew results in research studies. However, I choose to use this realization to view things from a provider perspective, to have open conversations that I am not expecting anything other than support. I am not looking for cures, I was not even looking for diagnoses--had completely given up on that years ago.  Then, was diagnosed with two major conditions that explained a lot of the previously unexplained, seemingly random symptoms. Those diagnoses caught me totally off guard. I honestly had thought I'd never know.

The other funny/not so funny side is....for some reason I still try so hard to function as normally as possible, to appear as normal as possible. I have accepted the various illnesses and limitations, accepted life will never be normal, that my body creates its own normal. So, why do I still try to appear "normal?" I honestly do not know.....just know that I do.  When my body is more or less held together with compression clothing and kinesiology tape, I find ways to layer other clothes over the compression ones, clothes that hide the tape. When illnesses are not quite as invisible as usual, find clothes to mask the rashes, or hide the bruising, or cover purple legs from pooling from poor circulation. Side note on kinesio tape--I think this is the human version of duct tape--universal for holding body parts together/in place. 😉 Second side note on kinesio tape--I of course reacted to the adhesive after a few judicious applications.  Sigh.

Right now, no one is quite sure what to anticipate.  As if multiple chronic illnesses, surgeries, etc. were not enough, a car accident had to add to the complexities. That set me back far enough in surgery rehab that no one knows what time frame or outcomes to expect anymore. My body is already predictably unpredictable.  Add the extreme unpredictability of a car accident, and we are all sort of making it up as we go. 

So, gastroenterology clinic called me recently to discuss medications, allergies, etc. before upcoming GI procedures and tests. Thankfully, no changes in medications or allergies for once (reacting to kinesio tape does not count as adhesives are already on the allergy list). I was asked current weight....she was not happy with the number I told her and how much lower that number is from whatever I weighed at my appointment in clinic just over a month ago.  Um, yeah, I know....she ended with telling me hopefully the testing will help GI doctor help figure things out. Yep, I hope so too! But, quite honestly do not expect it. I have had GI issues my entire life that I recall. We get things to livable level and I move on with life until things get out of hand again.

Here I am living with chronic invisible illnesses, but seeking to life fully in spite of the challenges.  This is what brought me to the title and theme for this blog. Rather than chronic illness, focus on chronic wholeness--physical wellness, emotional wellness, mental wellness, spiritual wellness, etc.

Chronic Wholeness. Pursuing wholeness in brokenness, strength in weakness, health in illness. 



Copyright © 2018 by Chronic Wholeness. All rights reserved.

Monday, January 1, 2018

Good-bye 2017, Hello 2018!

Here we are at the start of another new year.  An entire year is stretching out ahead, somewhat like a blank slate, offering a fresh start. The past year is over.  I like to reflect over the past year and what I learned, look ahead to the new year.  I rarely make resolutions. Rather, I have themes.  Sometimes the themes are chosen intentionally.  Other times, the themes emerge from circumstances as the year unfolds.  This last year, the major themes were trust and patience.  For the coming year, I am considering the idea of "being gentle with myself" as a medical provider encouraged me to do not too long ago.

Copyright © 2018 by Chronic Wholeness. All rights reserved.

An Introduction to Chronic Wholeness

I will be writing about chronic illness in the context of wholeness or wellness.  I chose this to be my theme or purpose:  pursuing wholenes...