Chronic Illness Warrior or Worrier? It’s in your DNA.

Your reaction to chronic illness is literally coded in your DNA.  Warrior or Worrier, your reaction is somewhat pre-determined.  In our Chronic Life and Spoonie patient community there is sometimes a bit of rub:   How come she always says this, and how can he do that if he really has this.  Therein lies another rub:  our susceptibility to living out our genetic profile is also influenced by diet, environment, and any schools of thought we adhere to as a matter of coping.

Heritability only explains part of the equation.  Dr. Andrew J. Shatté, Ph.D., (Chief Science Officer, meQuilibrium) wrote on the Warriors vs. Worriers topic for the Huffington Post.  He explains “why even the ‘tough’ need stress to rise to the occasion,” and how our brains process stress and those curveballs. We in the chronic community know what it feels like to suffer a direct hit.

I come from a long line of strong women.  Turns out my DNA profile confirms that family lore, and my strength.  For Christmas, David and I decided to do the Family Tree DNA Family Finder kit, and oh, how fun!  My Viking heritage is confirmed by way of Norway, Denmark, Finland, and new to me, the Orkney Islands.  Then there is my Native American Sioux heritage that no doubt brings more strength and resiliency.

warrior-gene

Warrior Gene rs4680(G;G)

Aside from the obvious thrill of confirming your heritage, or finding ancestry from new corners of the globe, testing comes with an incredible possibility.  Most any of the DNA testing services will provide the ability to download your entire DNA report. Simply upload your raw DNA files to Promethease, “a literature retrieval system that builds a personal DNA report based on connecting a file of DNA genotypes to the scientific findings cited in SNPedia.”  For a nominal fee of $5, Promethease will anonymously match your profile across like genetic populations (see a sample report here). This service is available to researchers, healthcare providers, and any customer of DNA testing services.  Single Nucleotide Polymorphisms (SNPs), indicate the precise position along a chromosome where the DNA of different people may vary. The website SNPedia functions as a gene-by-gene data base of current research for health and medical conditions.  It is continually updated with new research.

In addition to predicting my blue eyes, my DNA speaks to my own health concerns and those of my children.  Multiple times over, I have genes that indicate greater susceptibility for Spondyloarthropathy (likely my strong Scandinavian heritage). Unfortunately, this came to fruition in my daughter at age seven.   Both David and I also have multiple genes associated with Ehlers-Danlos Syndrome, and both of our sons were diagnosed with Classical Ehlers-Danlos about three years ago.  We also have random genes associated with “not specified” Dilated Cardiomyopathy, which struck our youngest son at just shy of his twenty-first birthday.  I am confident that each of my children bears the warrior gene.

Since Rheumatoid Arthritis struck me nearly four years ago, I have wondered and reflected how well I handle it physically and emotionally.  Do I fuss too much over pain, and how much am I able to separate mind and body from the pain process?  Well, survey says:  I’m a Warrior.   rs4680 at position (G;G) indicates “higher pain threshold, better stress resiliency, albeit with a modest reduction in executive cognition performance under most conditions.”  So, I have adapted well to my children having chronic diseases, and my own — though my grey matter takes a bit of a hit.

An unexpected finding, could be of huge importance:  I am a carrier of Multiple Sclerosis, and the same rs3135391(C;T) gene is associated with Lupus (SLE).  Most interesting, as I have had many Lupus-like overlap symptoms.  Initially I was diagnosed with Undifferentiated Connective Tissue Disease, which is sometimes referred to as pre-Lupus.   To see the SNPedia explanation of current data on rs3135391, click here. In addiction to medically relevant information, you can also learn handy factoids like the nature of your ear wax, reaction to coffee, or if you are a sprinter.  I’m betting you already know these things.

Our reactions to chronic illness are individualized, and we must not criticize another for how we outwardly perceive their experience.  Your reaction to stress, and your strength may not look like someone else’s.  Worriers have warrior spirits, and warriors have worrier spirits, too.  Trust me, some days this warrior is wrapped in fluff doing puzzles, watching House Hunters, and failing to accomplish needed tasks. Or most often, I live several levels of ability within a day.  I may have a burst of energy and optimism — then painxhaustion, and I hit that wall where autoimmune suddenly envelopes me in a flu-like feeling.  The point is, this warrior constantly fights within herself for strength.  And we all do this, regardless of what our DNA says about us.

There is no right answer, and there is no wrong answer.  We are human beings, and we are in these battles (and celebrations) together.  That knowledge is really what keeps this warrior strong.

 

 

 

 

 

Appreciating IS in the Midst of Chronic Disease

What an absolute delight to learn that Dr. Carlo V Caballero shared my writing on his Rheumatology 2.0 journal.  Dr. Caballero is president of PANLAR (Panamerican League of Assoc. of Remautology).  Thrilling to see greater communication between the physicians who treat us and patients who live chronic conditions.
There is a soft breeze drifting through morning light, a dove fluttering by, the industry of traffic humming in the distance, and an insistent woodpecker hammers out his intent.  There is the man of smiling brown eyes I found so long ago, and his gently hilarious approach to life.  There is the good cheer and by necessity, calm industry of my tall son who has learned to live with what could be perceived as a limiting condition.  There is the friendship of my son and his bride across the way, who share creative pursuits and forward goals, while contending with the onset of disease. There is the love of my daughter and her bridegroom, a few mountain ranges away, living creatively in different sunshine.  There is the knowledge that this daughter is stepping down from tall mountains today, choosing to live fully in the face of what could be only debilitating disease.  There is the story of the friend who helped her reach the second mountain peak. There is the story of old friends who remind me of who I have been, and new friends living similar conditions, who remind me who I can be.  There are unspoken words of wonder, and the shifting mystery I find in studying Tibetan Buddhism. There is the wonder of gazing skyward at night, of looking forward to winter evening walks under a sparkling velvet canopy. There is the at once cautious and bold doe who steps out of our woods, watching us watching her, glancing back for her fawn.
Sleepless nights and difficult mornings followed by trying hours can easily dictate the chronic condition.  I prefer to appreciate the IS.
There is the simple act of kindness that touches another soul. There is laughter shared, truths exchanged.  There is the possibility of possibility. Always.  There is IS.

Dear Otto(immune) #RABlogWeek

Here I am, mid-week.  And here you are, my unbidden companion.  Once again you have dictated the course of my days, my hours, and my energy.  I’ve had the best intentions.  You see, it’s the first annual RA Blog week, hosted by a delightful fellow named Rick Phillips who shares his writing at RA Diabetes.
I missed the first couple of blog topics this week, including the topic of energy.  Ironically it was this balance of energy that kept me from clicking the keyboard.  I awoke early Monday morning with ideas and goals flooding my mind.  This alone tells me that Enbrel has begun to work. Overall motion has improved, though pain levels remain the same.  Otto, you are still making your presence known in my hands, though the fingers will now straighten.  If you’d ease up on the jaw, the wrists, shoulders, ribs, hips, ankles, and toes, I’ll take you someplace nice. Realistically you’ve learned that I’ll take you anyway, because life is one big adventure.  Fresh air, architecture, history, and the sparkle of autumn light beckon.
Though the goals and motivations were there, Monday was a giant struggle.  To achieve that huge garage clean-up and gather donations for charity, require multiple talks with you.   Determination and pit stops carried me through this task that had been on my Tew Dew list for weeks (and a list is more fun when titled Tew Dew).  By the end of the day, I could barely walk and the heating pad beckoned.  Still, I forced the body to remain in motion and threw together a quick, healthy home-cooked meal.
Maintaining energy to prepare healthy food is vital not just for Otto and me, but also for my son. Before I developed Rheumatoid Arthritis, my young adult son became ill with Dilated Cardiomyopathy and Ehlers-Danlos Type 1.  Good nutrition has been a significant part of his health gains in the last four years.  As I always remind him, I need the motion, while his heart needs the rest.  And I’ve got a guy with Smiling Brown Eyes who loves my kitchen creations and we do so much for each other.

Tuesday passed as Tuesday’s will in any life, and especially in the chronic life.  Run here, run there, drop the truck at the mechanic, take chronic kitty to the vet, fight with unresponsive websites, then spend an hour on the phone with Enbrel and the mail-order pharmacy.  And complete all of this before the appointed Enbrel Hour.  Do that quick injection because there’s no time to be wimpy or squeamish.  Outwit the men at a game of Catan, take pup for a walk under the stars, and finally settle the Enbrel-hungover self into bed.  And will sleep to be mine. Otto, you won that game.

1970s Old Soul and Happy Camper
The game that you will not win is the game of adventure and the pure joy of life.  I’m an old soul with a young play list, and I have places to go.  Otto, you carry a lot of baggage, so pack it — we are going places.  We’ll rest along the way and feel the cool autumn mist rise from a wandering trail.  We will savor the sights and texture, view old stone walls and fresh green leaves, hear the footsteps of generations.  Otto, pack your bags.
Love,
Jody

Chronic Life Reality Show: An Amazing Journey

 
Chronic Life has all of the drama of reality TV. 
 
Inspired by my daughter’s Chronic Life live-tweet experiment for Health Central, I decided to have a little fun.  And perhaps illustrate what it’s like for those who are both patient and caregiver.  Just as anyone dealing with chronic illness, each day may take an unexpected direction.  

 

 

 

 

 

 

 

 

 

 

 

Next up on the Chronic Life Reality Show?
Win the Autoimmunity Idol.

Feelin’ Near as Faded as my Genes

Feelin’ good was good enough for me.
There was a time when feeling good wasn’t even a thought for our little family.  A little daughter with honey colored hair and eyes as blue as the Texas sunshine, and two adorable little boys with black hair who were often mistaken for twins.  Looking back at old family photos is poignant for anyone, but all the more so when your children are later stricken with chronic illness.  I am a strong, strong girl, and rarely dissolve into tears over the state of my children’s current health, but those photos.  That makes me break down.  To think of the could have, would have, should haves.  Yet I hold on to continued possibilities in life and the beauty of each new day.  We live in joy and laughter, and fresh air.
 
B was one year in the rheum.
 
My daughter grew up with Ankylosing Spondylitis from the age of seven, and years later my youngest son would be diagnosed first with Crohn’s Disease.  A long, emotional journey, and a string of specialists led us to a more firm and complete diagnosis of Ehlers-Danlos Type 1, Dysautonomia (POTS) and Dilated Cardiomyopathy. He is disabled at twenty-four and has had to redefine dreams, yet has shaped a beautiful life of value.  My middle son is also diagnosed with Ehlers-Danlos Type 1, but it is much milder with him.  I pray that this remains the case.
 
Fast forward a few years from the photo booth, and my common expression is:  busted flat in Baton Rouge, feelin’ near as faded as my genes.  What I would give for the genetics of health to be different, but the same genetics gave me the beautiful, generous, creative souls who form my family.
 
Janis Joplin sums up the raw emotion of Chronic Life:  

 
 
Each day we deal with the harsh realities and limitations of chronic illness, but still prefer to see it as chronic life.  Perception is everything.  I spend my days at home with my son, and we study, laugh uproariously, play cards and chess, watch movies, act goofy, meditate, straighten out world affairs, discuss history, and spend time in the fresh air.  On his lowest days, he tells me his his heart is tired, or that it feels like a “child’s heart.”  He writes and plays incredible acoustic guitar music and in the time he has been ill, has taught himself a fine command of the German language.  A new goal is to do remote work as a translator.  This is life, redefined.  
 
Still, chronic illness is a thief.  
 
Based on those early family photos, I’d trade all of my tomorrows for one single yesterday.