Tuesday, September 16, 2008

Chronically Yours

If you had the patience to read my entire profile, you can quickly deduct that I should be used to chronic illness when a few additional waves hit, since I have had fibromyalgia for 16 years. Well people, that’s really if one doesn’t get stuck in denial.....oh say for at least a decade and a half!

I find Elisabeth Kubler-Ross’ stages of grief seemingly apply to chronic illness, and I apparently got stuck. I rather view her proposed stages as emotional behaviors and while they were intended for grief and tragedy of terminal illness, Kubler-Ross applied them to any form of catastrophic personal loss. Chronic illness qualifies on many levels, but eventually one comes to terms of acceptance, and moves beyond. I’ve decided it can and must be lived, but on some level a continuous process this grieving is.

Like many of you, I was initially mis-diagnosed for a several years. So when the diagnosis of fibro was stamped on my forehead, I seriously had my doubts. Now, doubts are one thing, but how I joyfully over looked using a cane with a chair attached to shop while dragging along one very heavy, strong-willed toddler, I now recognize as a tad bit off. Leaning on furniture to walk and clean my home, whizzing through an airport in a wheelchair to greet friends on a lay over and receiving a permanent handicapped placard for my car should have been red flags. All red flags.

Never the less, I pressed on, much to prove to others that I could try to please and live up to expectations, including my own. I worked as a speech-language specialist with huge case loads of children and continued to pursue a family. When I was in too much pain the second time around to bear a child myself, my husband and I pursued the dream of adopting a baby. It was a dream I had quietly held in my heart since a child, but never thought it would come to fruition. Consequently, my illness also became one of my greatest of life’s gifts in that way. When I was better, we gave birth again. I was determined to have a family and wanted a large one at that. I now count my blessings for who I do have as I realize it did not have to turn out so favorably.

The years were unpredictable, but blessed. But hey, I think I’ve just careened through Kubler-Ross’s other stages at a really high velocity since some other stragglers came into being. I kept snowballing these diagnosis’s such as raynaud’s syndrome and picking up other complaints like labored breathing and increased generalized pain. I had lots of mystery symptoms such as disabling gerd, burning eyes, nose, mouth and ear pain. I never really responded to acid reducers and suffer constant gastritis and reflux, as well as spastic motility of the esophagus. I became what seems allergic/intolerant to almost all medication prescribed and over the counter, most foods and so much of life around me that I felt my body was engaged in a war with its self. It was a war no one else, including most doctors could see, which as you all know, tends to create it's own set of issues. I’m sure other sjogren’s sufferers out there can relate to the constant throat and vocal cord pain, burning and choking feelings present. If that does not make one seek God due to fear alone, I am not sure what will! Then came the peripheral neuropathy symptoms and so it goes on and on. Sorry, more than you needed to know. No longer in denial, I took up stock in the kleenex company for quite some time. That's stage is not a lot of fun and while I still dip in and out of it, I recall how much I loved life and now press on in this interrupted life that remains with as much happiness as I can muster.

I’m not making light of the other stages, as I definitely have walked through them and still do. It’s the severity of symptoms that cajoled me out of denial as they stopped me in my tracks. At least I now understand a bit better and I now know the mystery of me, that I have sjogren’s syndrome as well and probably have for 9 years now. It has a name now, but it’s not all that I am.

If any of you attended any of Rest Ministry’s seminars during National Chronic Illness Week online last week, you may know where our hope can come from. I believe in Lisa Copen’s slogan for the year that states: "Hope Can Grow From the Soil of Illness." It is hard, but with a foundation of faith, hope can and does return as one reorganizes and reclaims their own life. I’ve only been able to move on due to my faith and the courageous examples God has placed in my life and am humbled by their existence and help. All of you CI people out there, and you know who you are, have been a gift to me. You've helped me to find time for fun and laughter amongst the tears and to recall that God is good all the time.


Farrah said...

I decided a very long time ago that I would rather go through life "halt" or "maimed," than to say goodbye to my sweet son and leave him behind on this earth. It is one of the reasons I have been thankful for every day, despite the pain and challenges. Jesus has walked by my side every step. Lots of tears but lots of joy, as you say!

Jan Lyn said...

Yes, tears and joy definately can coexist. Took me a while to learn that one. I've really taken so much encouragement from BSHS and Rest Ministries and your blog/others. It helps me to have such examples as I press on. Seems there is always a new hurdle to jump with autoimmune. Sitting here looking at my rash from my first immune suppressant now that did not occur for 3 weeks in. I had been SO encouraged! Hmmmm.... Ultimately, God is in control I keep telling myself and yes, each day is another reason to be thankful.