My Rising Phoenix

by on May 28, 2013
in general

Sickandhappy Rising from the ashesIt has been a very long time since I have written a blog post.  There are several reasons why this is so, but all of them are in the past now, and I’ve decided I want to go back to blogging, so here I am.  If you are one of my 12 subscribers, and didn’t recognize the name of my blog when it appeared in your inbox, I can’t say I blame you.  But hopefully, you will give me a chance to redeem myself, as I have many, many thoughts to convey.

Yes, I am still sick.  Oddly, I still cough, sit on the toilet a LOT, and have funny looking fingernails.  Cystic fibrosis, it turns out, has NOT gone into remission.  Yet, most of the time, I remain happy; therefore, the name of my blog persists.  Why am I still smiling?  I’m going to list a few reasons, and then focus this post on the one that is today’s BIG DEAL reason to be happy.  Here goes:

1)  I am still alive.  At 52 with double delta 508, this is not a small matter.

2) I can swing and lift heavy kettlebells, walk my dog(s) for an hour or more, all with my very own lungs.  This is not just happiness-provoking.  It is just plain weird. I must have some seriously powerful modifier genes at work, and for this I am eternally grateful.

3) I have an incredibly supportive family, and friends who understand my health issues and will help whenever I admit that I need help.

4) I have two healthy kids…and this is what I want to write about today.

This last year has provided to me a confluence of two category five tropical storms of life.  In an odd way, the occurrence of each has helped me cope with the other.

The first storm occurred with the insidious onset of bizarre symptoms my youngest son began displaying 10 months ago. This is a very long story, and I won’t go into detail (because he would kill me if I did).  Suffice it to say, it grew increasingly difficult for him to walk normally.  One leg and his low back became so stiff and tight that he began “toe walking” and his hamstring grew more and more contracted.  Baseball, his favorite sport, was not happening.  He become more and more self-conscious (at age 14, you can only imagine) with walking in public, and his other mom and I became more and more worried.

Being Western-medicine trained, of course, this was my first approach.  But scans were normal, and we were told it was “likely related to growing fast.”  Then, hundreds and hundreds (ok, probably thousands) were spent on various therapies, both Western and “alternative.”  Nothing.  The poor kid endured hours of Active Release Therapy, which did nothing except cause him pain, and me, guilt.  Chiropractic…ditto.  Acupuncture…the same.

Finally, I said screw it, I’m going back to medical doctors and demanding something be done, as things were getting worse.  Of course, this whole time, I was online constantly, Googling away, trying to diagnose him myself.  I was obsessed, and when the Western docs scratched heads and mumbled about possible horribly progressive neurologic or muscular diseases, my Googling lead to sleepless nights, unrelenting anxiety, and constant forays into visions of a painful and depressing future for my beloved son.  This sucked, in a word.

At about the height of far-reaching diagnostic possibilities being considered, my father died. This was tropical storm number two.  It was not that this was unexpected.  Dad was 90 years old and had progressing pulmonary fibrosis.  As my mother had died just over two years ago, he was ready to die.  He was in pain, his wife and (almost) all friends had all died, he had settled his affairs, and as he told me every time we talked, he was “just sitting here” waiting to die.  It was sad, but he had a very good attitude about it.  So when he died, we were all very sad, yet happy that his wish to be released from pain and reunited with his wife had been fulfilled.

Alright, two stressful events happening more or less simultaneously each helped me cope with the other.  How did that work?

Let’s start with Dad’s death…and that of my Mom almost three years ago as I write this.  Living with anxiety and frank fear for a few months regarding my son’s health has given me an appreciation of what my parents went through decades ago, as they learned that THREE of their children had a horrendous genetic disease, and that none would likely live into their teens. Nobody can possibly understand that kind of pain unless they experience it.  I never got it…and therefore, I never learned to appreciate just how functional they remained as they learned to deal with this tragic news.  My few months of uncertainty and anxiety could not even touch the agony they must have felt…for years…until the day each of them died.  They lived through the death of two children, and were always waiting for the last shoe to fall with me, the last of their sick kids.  I just didn’t get it.  But now I do, and the admiration and appreciation I now have for both Dad and Mom helps me cope with the very strange feeling of having no living parents.

How did I benefit from my father as I coped with those anxious winter months of uncertainty regarding my son?  Basically, I talked with him about it, and he understood my pain.  Having another person listen and understand exactly how you feel in the pit of your stomach as you wait for a call, or for the next appointment, or for the MRI results, is exactly the right coping strategy (it most certainly beats Googling for hours on end and reading about worse case scenarios).

So why am I happy?  I had great parents.  And now I have a healthy son, who has successfully undergone surgery to repair his tethered spinal cord and is waiting to begin physical therapy again, this time with a much higher chance of success!

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2 Responses to “My Rising Phoenix”
  1. Sarah says:

    Hello! I just stumbled across your blog today and haven’t been able to stop reading. I was doing a google search for information on working out with CF. My boyfriend is 24 and has CF and we recently joined the gym together because we both want him to feel good. He was wondering if it was possible to gain muscle so I googled it and came across your blog! I’ve been writing down your advice and am going to design a workout plan and a meal plan for us based on the things in your blogs! Just wanted to say thanks. And though I only found you today, I’m glad you’re back! 🙂

    All the best,

  2. Julie Desch says:

    Hi Sarah! I’m glad you found it, too:-) Your husband can ABSOLUTELY gain muscle. Tell him to lift weights and eat more (especially protein). If he wants to gain mass, the best idea would be to use moderate to heavy weights, and work slowly up in volume. Cheers!

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