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

   

An Anniversary

Cake, short a few candlesImage by nutmeg66 via Flickr
Today is an anniversary of sorts. It’s not a wedding anniversary or one that brings back happy memories. No, it is one that I never saw coming, never even imagined, but thanks to God, I live to tell.  So I suppose that I tell you this memory, not wistfully, but with zeal and gratitude that one year later, I write this post. 


First, I know, like everyone else, that my days are numbered and that we are promised nothing beyond this moment.  Nevertheless,  on June 2, 2010, when two pulmonary emboli forced me to confront my mortality, I was ill-prepared.

In hindsight, it seems so silly of me but at the time, I thought that I had nothing more than bronchitis, or at worse, pneumonia. I was having difficulty breathing and when I called my doctor’s office, I learned that he was out of the office for two weeks. His nurse told me that if the symptoms worsened, I should go to the nearest emergency room. I didn’t and choose to wait for my doctor’s return. On the morning that he returned,  I called his office. I requested an appointment. Upon hearing my symptoms, he refused me an office visit, and told me to go to the nearest emergency room.  I thought that was overkill and insisted on an office visit. He told me that if I came into the office, he would send me directly to the emergency room.  I relented and went to the nearest E.R., where initially they clearly seemed doubtful that there was anything that warranted an er. visit. They repeatedly asked me, “Who told you to come here?,” and each time I replied, “My doctor.” I did not want to be there anyway and certainly did not want to be viewed as someone who runs to the emergency room needlessly, so my doctor was taking the blame.


At first, the standard examination, x-ray and such indicated no serious problem and the doctor appeared ready to herd me out the door. I figured that I’d get a script for a ventilator and go home. Well, the first sign that something was wrong was seen in my blood work. The doctor who before had to make an effort to appear remotely interested, became overly interested. He came in to tell me that there was a problem in my blood work and they needed a CT scan. About 15-20 minutes passed between the scan and the doctor’s return to my room.  Instead of standing up, he sat down and I said, “I guess it’s the lawyer in me, but if there was nothing wrong, you would have said what you had to say and left.  Since you sat down, I assume that you have bad news.”  He gave a little smile and mentioned that his back hurt, but said, “Yes, I have some bad news.”

In brief, my blood was “sticky” and prone to clot, more so than is normal. These clots travel through the body, and end up in the brain causing sudden death. Mine were found in my lungs before they travelled to my brain. The doctor said, “you could have died at any moment before these clots were discovered.” The dam broke and the water works sprang forth.

All that I could think about was my loves: my mother who has already lost one child and didn’t deserve to lose another; my children, each so special in their own way and whom I love with all my heart ((I cannot overlook the two best son-in-laws in the world. I could not have chosen better men for each of my daughters. They mean the world to me and our family.); my g’children, especially Daisy who is the one that, because of geography, I know best. I’ve watched her grow from an infant to the independent thinker that she was even at 4 1/2 years old; my husband, who after years of challenges that would have broken up many marriages, we are intact and have decades to grow and love–together; my sisters who even though I am not close to, I love with all my heart and wish them nothing but good health, joy and happiness; my family who as the years go by is ever more important to  me as a connection to who I am and where I am from; and finally, my friends, some of whom closer than family.

After that conversation with the E.R. doctor, things happened quickly.  I was given the first of many injections of Lovenox, a blood thinner. I was prepared to be transferred via ambulance, to a highly skilled facility in Austin and within 30 minutes I found myself on a surreal journey. Cars pulled over to the shoulder to allow us passage, something that I’ve done countless times in the past without giving much thought to the passenger in the ambulance.

In all candor, I was terrified, because this was the closest that I’d come to death. Granted, fibromyalgia was so debilitating that it forced me to stop practicing law, but fibromyalgia by it self doesn’t kill.  There are many times that my pain is so great that I think that I am near  death, but I live by the belief that, this too shall pass, and each time it does.

My memory is cloudy at this point, but I remember feeling overwhelmed and anxious because people were descending upon me from all sides. I was being poked and prodded, asked a million questions, while copious amounts of blood was being drawn from my body.  What compounded my fear was the unknown. I did not know what happened, why, and whether it would happen again.

Hours later, I met my doctor for the first time.  He walked, sat down and reassured me that I was fortunate. His words were, “It is not common that I’d be sitting here talking to someone with your diagnosis, because the clots are not discovered in time and they die.” Now, if his intent was to allay my fears, it didn’t.  However, he did explain to me what happened and the plan for treatment.  He also ordered tests to determine whether the clots originated from my legs or my heart.  Both were negative.  As of this date, and with one round of genetic testing behind me, no one knows what caused my pulmonary emboli. 


For months after the diagnosis, I was so terrified that I would not wake the following morning, that I couldn’t breathe, which did nothing but feed my fears.  When I did sleep, I had terrible nightmares. It was probably three months before I could sleep through the night and longer still until I let go of my persistent worries about a return of the emboli. At this point, my choices are (1) to stop the blood thinners and watch and wait to see if the blood clots return, or (2) to continue the blood thinners and accept the risks posed by them. They are blood thinners and as such, a minor injury, could very easily turn into a serious problem and warrant an emergency room visit.  

The deciding factor for me is the unknown. I can speak only for myself, but stopping the blood thinner and ‘watching and waiting’ is not for me.  It is certain to negatively affect my emotional and mental health. At least for now, weighing the options, I chose option 2.  Sure it requires frequent blood tests, but then, it allows me to sleep at night, relatively sure that I won’t have a repeat of last year. 


Thanks for listening.


Blessings, lydia  
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