Acceptance

BlessingsBlessings (Photo credit: earthquakefish (david))
When I started this blog, I intended to stay away from my health issues as much as possible–too boring, I thought, and certainly not pertinent to my journey.  Over the last months, I’ve come to realize the folly of that decision.  My health and fibromyalgia impacts everything that I do, including writing this blog.  I’ve tried to run away from it but it always asserts itself in one way or another. Acceptance seems the only answer. So, I am ready to stop fighting and to run with it. Blessings, Lydia
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But, You Don’t Look Sick

“Dear God, I want to thank you for being close to me so far this day. With your help, I haven’t been inpatient, lost my temper, grumpy, judgmental, or envious of getting one. But, I’ll be getting out of bed in a minute, and I think I’ll really need your help!”

I stumbled across this prayer while reading a Kindle sample of the book “You Don’t Look Sick: Living Well With Invisible Chronic Illness,” by Joy Selak and Dr. Steven Overman. The prayer was sent to Ms. Selak by a friend with fibromyalgia–a condition that I know well.  Nevertheless, neither fibromyalgia patients, nor any group for that matter, can stake any special claim to this prayer, as it has universal appeal to each and every one of us.  Anyway, the prayer, though humorous and most mornings, all too appropriate, is not the real reason for this post.  


In November 2010, I began a blog post titled “You Don’t Look Sick,” much like the title of the book.  The post was in response to yet another “but, you don’t look sick” encounter that occurred earlier in the day.  In that particular encounter, I was just getting out of my car at the grocery store where I’d stopped to go to the pharmacy. Before I could get both feet on the ground, a woman, that I did not know, violated what any reasonable person would agree was my personal boundary.  One of the store managers sheepishly stood behind her. (I knew him well.)  Pointing her little bony fingers in my face, she said to him, “See what I told you. She is one of those people illegally parking in spaces reserved for disabled people.” You see, in my haste to get to the pharmacy, I’d forgotten to put up my hang tag. Dennis, the store manager said, “Lydia,  would you please use your hang tag?,” and he turned around leaving me to deal with the still unsatisfied and irate woman. 

She proceeded to accuse me of illegally parking with someone else’s reserved  parking hang tag and threatened to call the police and more.  I made a sincere effort to calm the lady, but there was no reasoning with her.  Finally, she uttered the words that I’ve heard time and time again, “You don’t look sick!” so that tag cannot be yours.” At this point, my patience and attempts at reason were spent and I slammed the car door and stormed into the store, before I said something that I’d surely regret later. 

Long after I returned home and the immediate sting of the incident had passed, the woman’s words continued to reverberate in my mind. I have no doubt that there are those who will read this post and consider my response as unjustified, overly sensitive, and in the category of ‘making a big to-do about nothing.’  For those without an “invisible chronic illness” or with no contact to one who has such as illness, it is often difficult to understand what it is like for those of us who do.  I mean, who can blame you when there are patients who are still confronting doctors who refuse to acknowledge their condition because it cannot be substantiated by x-rays, CT scans, MRI’s, blood work or any other means of diagnostic tools.  The underlying message becomes, in order to be deemed “sick,” there must be objective evidence supporting your illness; for example, a broken limb or a bald head (indicating a potential chemotherapy recipient or cancer patient).  The problem is further compounded when pain is the primary symptom because there is no objective way to measure it. 

On its’ face, “you don’t look sick,” (often with the emphasis on the word ‘look’) is seemingly innocuous and usually said with no malicious or bad intent.  Nevertheless, to those of us in the throes of a chronic, invisible illness; this otherwise harmless statement, raises yet another obstacle in the fight against the illness. If wishes were true, I’d gladly turn over both the hang tag and the parking space.  


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First An Apology; Then an Explanation

Since I’d been all but AWOL for the past couple of months, I feel that I owe you an explanation and a sincere apology.  On June 7th, I had surgery to remove the pain pump that I discussed here in my June 6, 2011 post.  Unfortunately, the recovery was not as easy as I’d been led to believe and it brought fever  and additional pain that made it impossible for me to do anything for weeks.  As if that were not enough, about a month prior to the surgery,  my fibromyalgia pain began to inexplicably increase and morphed into whole body muscle spasms that affected my entire body, from head to toe.  I was doing hours of meditation and relaxing yoga poses, as well as ice, heat, herbal remedies, homeopathic remedies, and prescription medication, but nothing helped.  By the time that I began to heal from the surgery, the muscle spasms began to really take hold and I had no energy to do anything–standing was painful and exhausting,  even driving was impossible.
My daughter took me to my primary care doctor and he ordered blood work.  I went in for the blood work on Saturday and was surprised to hear from my doctor on Monday.  Apparently, my muscle enzymes should be in the 13-200 range.  Mine were over 1300!  My doctor believes that this is the source of the muscle spasms that I’ve been experiencing for at least a month and a half and the overwhelming exhaustion, (much worse than that caused by fibromyalgia) that I have been unable to shake.  He has removed me from three medications that may be the source of the problems.  I retest in a month and pray that all will be well.
I did not intend to be away from my blog for so long, and I have truly missed it.  I have had ample time for reflection, too much in fact.  Among other things, I thought about this blog and its place in my life, since I created it last year.  It began as one of those things that I’ve always wanted to do,  and after being diagnosed with the pulmonary emboli, it became time to stop thinking and to start doing.  As a result, Seeking My Querencia was born.
At first, I viewed this blog “as a repository for some of my thoughts, ideas, musings and others items of interest.  It is but a small part of my journey-another avenue for me to write down my feelings and perhaps share them with others so that they might know the authentic me.” See “More About Me” Page. I am coming to see it as much more than that now. At this time in my life, I am awash in struggles concerning not only my health, but my place in the world, how to move forward in my life, where can I use my abilities to best serve myself and others, and other weighty, and not so weighty issues.  Right now, I believe that this blog is the perfect forum for me to address many of these concerns, if for no other reason than to get them down in black and white, so to speak.  By doing so, I fight against my tendency to keep the uncomfortable thoughts and feelings inside where they fester and grow into matters of far greater import.  In addition, this inner journey that I travel towards that inner place where I know exactly who I am  requires that I be as honest as possible with my thoughts and feelings and it is through this blog that I’ve found that voice.  Granted, it is difficult at times, but then, isn’t that the way it is with anything worth doing?
I hope that you will be patient with me as I ease my way back onto my journey.  Thank you for sharing it with me.  
Blessings and love, lydia  

Let Go, Let God

Today is a blah day.  It is not for the weather outside because the sun is shining, the sky is blue, and save for the triple digit temperatures, the day is perfect.  No, it’s me.  There’s an unease afoot.  You know, that queasiness in your stomach that sounds an alarm to get your attention?  Of course, the queasiness could be just that, a queasy stomach.  But I feel some foreboding, something that I just can’t put my finger on.  There is some trepidation about tomorrow, (I’ll get to that in a moment.) but I don’t believe that is it. No, I feel that there is something more–something sinister.  I pray that I am wrong.  But for now, I have to let that rest.  There is nothing to do about the unknown, about the future. The present, however, is awaiting my attention, so let me get to now.  Let me explain.

Since I am well aware of my tendency to be verbose, I will cut to the chase.  Tomorrow, I  have a pain pump removed.  On December 2007, it was implanted because of intractable pain caused by fibromyalgia.  I wish that I could say that the pain is gone and the pump is being removed because it has done its job, but that is not the case.  I am having it removed because after about 2 1/2 years, the pump’s liabilities began to outweigh its benefits. It  began to bring a whole new world of problems, and they were only getting worse.  After changing doctors, and taking months to wean my body off of that medication, it is time to take the final step–to have the pump removed. 

I’ve never accepted the pump as a part of me.  I resented the fact that I had to have it, and at some level felt that I’d failed by having to get to that point anyway.  Even though over the years, I’ve tried everything known to man to deal with this, this fibromyalgia, some voice inside still whispers, if you’d had tried some other therapy, some other this or that, if, if, if.  Having the pump removed, allows me to have my body back–pain or no.  It is just me.  The pain and other symptoms, yes, they are there and we have to deal with them, but I am fine with that.  I will be glad to be free of the pump. Of course, I am uneasy about the surgery (Who wouldn’t be?), but I have faith in my doctor.  If all goes well, which it will, I’ll be home tomorrow night.  Between now and then, my mantra is going to be “let go, let God.”  Until next time.

Blessings, lydia