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Overcoming “Chronic Disease Persona”

June 25, 2013 Leave a comment

In a few short weeks, I reach another milestone-my 50th birthday. I’m a firm believer that age is just a number. I’ve seen people younger than me who look like they are older, and elderly people who look much younger than their age.

That belief hasn’t been so firm over the past month.

I’ve had hereditary neuropathy (Charcot Marie Tooth or CMT) all of my life, but it wasn’t until around 1996 that I found out about my PKD (Polycystic Kidney Disease).  Around 2003, my kidney function went below 60% (the magic cutoff for Stage III CKD, or Chronic Kidney Disease).  It was probably at that point that I started with, as I call it, the “Chronic Disease Persona”.

Having been a nurse for 24 years, I’ve seen a wide spectrum of how people react to their chronic illness.  This includes denial, anger, acceptance, and the other extreme of letting it consume their life either to the point of becoming so fixated that they try whatever they can to fix it, or they become depressed and hopeless.  For me, I was more towards the acceptance part of the spectrum, with a brief period of looking for fixes that just aren’t there.

I’m a very analytical person; my mind works constantly to figure out specific problems (not the math type either), and come up with plans and solutions.  I’ve been through a fair amount since 2005, when my GFR hit the magic 20%; you know, the time they tell you that you need a dialysis fistula, and “let’s get you evaluated for the transplant list”.  In August 2005, I had surgery to “create” my dialysis fistula, and less than a month later, emergency brain surgery for a subdural hematoma, followed several days later with seizures, and a hospitalization.  Since then, I’ve had my transplant, major surgery on both feet to “reconstruct them” (by far the most painful of the 8 surgeries, but worth it), and several other “speed bumps” along the way.

It probably wasn’t until around 2005 that my “Chronic Disease Persona” was at full bore.   But it took my upcoming birthday to realize that the birthday isn’t what is affecting me.  It’s the fact that I have been looking at myself as someone who has a lot of medical issues.  And that just isn’t me. I try to live the phrase “it is what it is”, and I think I have been doing that fairly well.  Overall, I’ve done my best not to let my illnesses consume my life, but ironically, they’ve been doing that lately, even though I’m in MUCH better shape now than in 2005!  So with that realization, I’ve decided it’s time to drop the CDP and think of myself as normal (although that’s a relative term).  Back to enjoying life-playing practical jokes at work (which I was famous for), laughing more, enjoying family and friends once again.

It’s easy to slip into CDP.  Those of us with chronic illnesses have more contact with the healthcare system; labs, doctor visits, procedures, tests, none of which we really have any control over. But it’s how we react to all of this that really matters.  Although we may do our best to deal with it, I think that without realizing it, it affects us.

Now that I have realized this, I’ve decided to return to how I was (at least mentally/emotionally) before the rollercoaster ride began in 2005. I’ve had fixed what needed to be fixed, and there are FINALLY no upcoming surgeries on the horizon.

Under the guise of the “crisis” of turning 50, I had my ear repierced this past weekend.  I had it pierced back in the mid 90′s, and kept the earring in until around 2005, when a lot of this started.  So for me, it’s really symbolic-it’s my way of becoming “normal” again.  My initial thought on doing it was that I was turning 50 soon, and was a way of fighting this.  But now that I think of it, I really think it’s more of a fight against how I was living, thinking of myself as a “chronic”.

So take some time to think about how YOU are dealing with your chronic disease.  Make changes; it’s easy to get “stuck” in all that we must deal with.  Small changes can make a big difference.

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Medical Article Scan September 2008

October 1, 2008 Leave a comment

MMR Vaccine Not Linked to Autism yet ANOTHER study disproving the link, although as this article points out, Although true believers in the theory of a relationship between MMR vaccine and autism will probably not be dissuaded…

Chronic Kidney Disease Heightens Medical-Error Risk this is a study of 250,000 patients in Veteran’s  Hospitals. Key points: the increased risk was linearly related to the severity of kidney disease, The researchers looked for records of 18 complications that are potentially preventable, and their data don’t distinguish between events caused by healthcare and those related to the underlying kidney disease.

Mother’s Flu Shot Protects Newborns when I first started out as a RN in Peds 19+ years ago, influenza was not really considered in infants that were symptomatic. In fact, flu shots were only given to those at “high risk”, such as those with chronic illnesses. Now, the flu vaccine is recommended for ALL patients in our practice up to 18 years of age. This study has concluded that pregnant mothers who get vaccinated while pregnant can pass on protection to their child prior to delivery.

Living Donor Liver Transplants May Drastically Decrease Mortality From Liver Failure Acute Liver Failure (quick onset as opposed to chronic liver failure, which is gradual) may be able to be treated with living donor donation for transplant. I’ve always said that I’m lucky; if I didn’t get a kidney, I could do dialysis; if I needed a liver and didn’t get it, I would die. I hope this pans out.

High Blood Pressure Takes Big Toll On Small Filtering Units Of The Kidney  Although this isn’t exactly previously unknown, scientists are getting closer to figuring out how the glomeruli are affected by hypertension. If you have high blood pressure, this underscores how important it is to get it treated effectively.