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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House in Sasino.Image via Wikipedia
Such a simple word with such big implications.  When we say, “I am going home,” we should mean, I am going to my sanctuary, my place away from the world and all its’ craziness and demands, to the place where I can “let my hair hang down,” so to speak.  Home should be a refuge from the world outside, where you feel safe.  
For the past two weeks, I was in L.A. with my daughter and her family.  On May 10th, three days after my arrival, I was blessed to witness the birth of my newest g’child, a boy.  He is healthy and beautiful–so is his mother.  Anyway, I was there to help my daughter through her early days as a Mother.  Let me say that I relished that opportunity.  Yet, I learned one thing. When you are in someone else’s home and they tell you “make your self at home,” it is virtually impossible to do so–at least for me.  I want to make it clear that my hosts were gracious and opened up their home to me.  They wanted me to be as comfortable as possible.  My daughter and I are as close as any mother and daughter could be, but in the back of my mind, I always remembered that I was in her house, surrounded by her things. 
One night, letting warm water seep into my painful, aching muscles and bubbles take me way, I forgot where I was and languished in the bath as I would do at home.  I was soon reminded that I was not home. After attempting to wait me out, my poor son-in-law had to knock on the door to inquire when I’d be out.  I was chagrined at having made him wait.  On two separate occasions, I managed to destroy two of their plates–one a wall hanging and the other, a salad plate, part of their everyday dinner ware. The wall hanging was broken when I somehow managed to bump into it.  Since I can be rather clumsy, it is no surprise, but still, it was not mine to break.  Now the destruction of the salad plate was more complicated. However, cutting to the chase: Not knowing how to use the timer function of their microwave, and forgetting that I’d left a salad plate there, I set the microwave to cook for 15 minutes.  Well, let me tell you, a microwave can cook, no char, a plate in under 15 minutes.  I was busy holding my g’son as B. walked into the kitchen. It was beginning to fill with the scent of burnt plate.  She shouted, “Mom, what are you doing?” I said, “Using the timer.” She responded, “You left the plate in the microwave.” She opened the microwave and took out a charred cracked plate, barely recognizable as the blue plate that went in.  I took one look at it and at first, said–nothing.  What could I say?  Then I said “I am sorry” more than once and that I would replace the plate.  Then, the guilt set in.  Being raised Catholic, guilt is my middle name.
These are but a few of many incidents that occurred during my two weeks in L.A.  At home, I can take a bath as long as I wish, and I can break every plate in the house if I chose to without feeling any guilt, because they are mine. (Of course, I will have to answer some pointed questions from my husband about the whereabouts of our plates, but that is beside the point.) Being home provides a comfort and latitude that being in another’s home can’t provide. It is difficult to “let your hair head down” while you are ever mindful that you are not at home and that you can’t just let it all hang out if you wish. 
Nevertheless, this post in no way suggests that I wish to remain in the comfort of my own little home.  No way!  I am ready to explore–fibromyalgia be damned.  By my experience, I simply recognized how my daughter, who visits us about twice a year, might feel when she’s here. It makes me more aware and intent on making their stay as comfortable as possible. I plan to visit as often as possible to spend time with my daughter, son-in-law, and new g’son. My long ago experience with L.A. was not a good one, but the little that I saw during my recent visit made me want to see more.  Since it does not look like they are coming home anytime soon, I’ll have ample opportunity to explore.

There was one final realization. It is that my daughter is happy and for the time being has found her place in the world.  She is now a mother, and a great one at that. My g’son is more blessed than he can ever know to have B. and K. as his parents.   They have made a home in L.A. and although I would love for them to come home, that is not my choice to make.  For now, their “sanctuary” and “refuge” is in L.A. with their son. I have to respect that.

Oh yeah, as I venture away from home, I realize the old adage to be true, “absence does make the heart grow fonder.”

Blessings and love, Lydia

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When will I learn that I can’t ignore it. It is always at the ready, prepared to take the upper hand,  to barge in, and interfere with my life. It has no regard for what I am doing, whether I’m having the best day in a long while, none of that matters. No, it will have its way no matter what, and I can only watch and wait until it takes its hold. This intruder is that symptom of fibromyalgia–fibro fog. 

For the past couple of weeks, I have been engulfed in “fibro fog.” Fibro fog can best be described as a variety of cognitive impairments. At least in my case, fibro fog always exists, but lurks in the background.  Then there are times, such as these, when it makes its presence known in a big way. During these times, I have difficulty finding the right words to express myself, I lose things, I forget what I am saying in the middle of a conversation, I cannot remember where I put something that I had even five minutes before (I have literally hidden Xmas gifts, forgotten that I even hid them until months later, when I happen upon the gift.) I forget how to spell words that otherwise are a breeze for me, I see one word and read it as another similar word (e.g., “town” becomes “torn”), I easily forget what I am doing, like last week when I flooded the bathroom because I forgot that I started a bath, and I could go on. Suffice it to say that these periods cause frustration, stress and more.  Things that I love doing, like this blog, take a back seat to fighting the latest onslaught.

As always, this too shall pass, and the fibro fog will retreat to the background, to its place as a mere annoyance. Until then, I have the perfect opportunity to practice patience, which is a virtue that I do not possess in abundance. I’ve have learned one thing from this though. I keep trying to avoid discussions of fibromyalgia on this blog because I think, “this is a blog about me and my journey and not fibromyalgia.” Well, news flash!  Fibromyalgia IS a part of my journey and denying it only delays  acceptance of that fact. It is time that I accept it.  For now, at least, fibromyalgia, and all its symptoms and the madness it causes are very real and a part of me. Yes, whether I want it or not, it has a place here.

If you want to learn more about fibromyalgia go here.

Blessings, love and peace, lydia

The Day After

You're my blue skyImage by bella lago via Flickr
I lay awake with a blanket over my head. I can already tell that it is going to be a beautiful day because of the sunlight pouring through holes in the blanket. I don’t talk. I don’t move. For more than an hour, I just lay there, perfectly still, like a horizontal statue, listening to the voices of my husband and mother as they talk in another room. After a while, my body is stiff from not moving, so I uncover my head to take a look at the beautiful day that beckons outside my window. From past experience, I know that there is no certainty that I will have an opportunity to enjoy this day.  Fibromyalgia (fibro) has no respect for deep blue skies and sunny days, holidays, birthdays or other special days.  Fibro works on its own timetable, with no concern for my wants or needs. So, it is with trepidation that I work up the courage to test my body, to see if this latest skirmish with fibro pain has run its course; to see if pain will rule on this beautiful day. So far, so good as I gingerly step from the bed and into this beautiful day.

Blessings, peace and happy holidays, lydia marie

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