The Beauty in the Unremarkable!

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In my last medical update I shared that I would be doing a sleep study that night (July 16).  I did, in fact, do that, and–believe it or not–I’m still waiting to get the official results!  Any day now, they tell me…. That really was quite the experience–one that I wouldn’t necessarily recommend!  At least not if you’re wanting a relaxing little getaway, like I was….!!  It turns out that it’s not so easy to sleep with some thirty electrodes attached to various body parts, a nasal cannula that’s measuring the temp of the air going in and out of my nose, and a video camera recording my every toss and turn!  Who woulda guessed??  Check out the photo of me that I had the sleep technician take once he got me all wired up, hooked up, and pepped up for what turned out to be a downright unpleasant and exhausting night!  I will share results from that memorable night when I get them.

One hot mama!

One hot mama!

Moving on, then, the following week, I actually had an MRI of my brain–another pleasant and relaxing experience!!  For close to three-quarters of an hour, I had the perfect excuse to lie flat on my back, eyes closed, with nothing to do and no one around (well, except for the technician but he was in another room most of the time!)–what’s not to enjoy?  With the exception of a few barely noticeable distractions–including those almost deafening banging and thumping noises that occurred  intermittently throughout my time there, and that brief period when the machine in which I was “encapsulated” vibrated and roared around me like a freight train, and the fact that the upper half of my body was “locked down” inside a plastic tube whose opening was hardly any larger than me, so that if I had, in fact, opened my eyes, which I did not do, I would have been looking at a wall of neutral-colored plastic just an inch or maybe two from my face, for those forty-five minutes (I don’t consider myself claustrophobic but yikes, I think I would have lost it had I left my eyes open!)–with the exception of those minor disturbances, it was practically like a day at the spa!  🙂

SO, the purpose of this second most memorable experience, so close on the heels of the first one (i.e., the sleep study), was to look for any brain lesions or other abnormalities that would indicate the presence of multiple sclerosis or possibly some other sort of…something…that could be causing my fatigue.  While that may seem like a frightening possibility, that morning as I was driving up for the MRI, I was honestly feeling like I would almost be disappointed if the results came back normal!  I was finally, I think, feeling a noticeable amount of frustration that there has been no diagnosis associated with this fatigue.  No reason.  No name.  Nothing that would give it some legitimacy…. As much as I would not deliberately choose to experience life with MS, I reasoned, if I were given that diagnosis as a result of this MRI, at least there would finally be an explanation for the fatigue.  A perspective skewed, perhaps, by ten months of not knowing, and in that time, a few moments of not only “This sucks!” but also “Is this all in my head??  Am I just getting older?  Is this just a normal decline in energy to be expected in this middle stage of life?….”  If only there were a name, then I would know it wasn’t just due to getting older, nor was it just all in my head.  There would be something I could point to, something to pin it on, something outside of myself that could be held responsible….

SO, I met with my doctor the following week to get the results.  A much quicker turnaround, thankfully, than with the sleep center, as I can live much more easily for many more weeks not knowing if I have sleep apnea than I could not knowing if I have MS!  He quickly told me that the MRI showed no signs of anything out of the ordinary.  Everything was fine.  The report stated, in fact, that my brain is totally normal and completely “unremarkable.”

I was, of course, relieved.  I realized that that was, really, the easier-to-swallow outcome. It would be nice if there were an identifiable reason for the fatigue that I continue to experience…but perhaps it was even nicer that that reason did not turn out to be multiple sclerosis or any other condition that would involve lesions on my brain!

After the initial relief, however, my thoughts went quickly to the word “unremarkable.”  My brain was “unremarkable”??  Really?!?  My brain??  I took some umbrage at that!  To the contrary, I have always believed that my brain is quite remarkable!  Special.  Unique.  Amazing, even!  Anything but “unremarkable”!  🙂

But there it was, in black and white, penned by a medical expert and relayed to me by another.  “The patient’s brain is unremarkable.”  Not a lot of room for dispute.

So if my brain was unremarkable, did that mean that I, too, was somehow unremarkable? That who I am, and how I see the world, and how I live my life were all, in fact, unremarkable??….

Nahhhh!  That couldn’t be.  I had always believed, even more than my brain being remarkable, that there was something remarkable about me!  I had always believed, if only deep down, that how I saw the world was somehow unique, that how I lived my life was in some way special, that who I was, was a little bit amazing, even!  …Okay, well, that may be a stretch.  🙂  But never have I wanted to believe that I–me, my life, my impact on the world around me–was unremarkable!  There’s no good in being unremarkable!

Hmmm….

Then I happened to read a devotional written by Henri Nouwen, one of my favorite authors and someone whom I’ve quoted before on this blog.  Within that devotional, I read and was struck by the following words:

“The largest part of Jesus’ life [i.e., his childhood and youth] was hidden…. If we want to follow Jesus by words and deeds in the service of his Kingdom, we must first of all strive to follow Jesus in his simple, unspectacular, and very ordinary hidden life.”

His simple, unspectacular, and very ordinary–in other words, his unremarkable–hidden life.

The largest part of Jesus’ life was, according to Nouwen, unremarkable!

Not special, or unique, or amazing.

Ordinary.  Unspectacular.  Simple.  Hidden.

Unremarkable.

And, Nouwen suggested, that’s what we–what I–who desire to follow him need to strive for as well!

More desirable than striving from the get-go to stand out, to be the best, to rise to the top of the pile, is living an ordinary, unspectacular, unremarkable life…and living it well.

More fulfilling than giving my all in the secret hopes that I might be recognized as deserving of praise, is giving my best in the simple, hidden, unremarkable tasks that fill my day-to-day life, trusting that it’s in the faithful and quiet doing of those tasks that Love is made flesh and the Reality of God is revealed….

More beautiful than longing to be acknowledged by the world around me as somehow remarkable in my living and doing and being is striving to love in simple, unspectacular, very ordinary, and even hidden ways.

It turns out there is Good in the simple.

There is Good in the unspectacular.

There is Good in the ordinary.

It turns out that there is Beauty in the unremarkable!

Thanks be to God!  🙂

 

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Most recent blood tests/medical update

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So…I’m back!  It has been a while since I’ve taken the time to write anything here.  As I had anticipated but not fully “appreciated,” having the kids home from school all day every day has, indeed, been taxing!  Don’t get me wrong–I love my kids (and most of the time I even LIKE my kids! 🙂 ) and I’m grateful to have the summer so we can play more, let go of our normal routines, and spend more time together.  But I really am missing having large chunks of time when there is no one around, when I don’t have to be “on,” when I can keep to myself and think my own thoughts!  Not to mention, overall, I am just feeling plain old whipped!!  It’s been a little unsettling, in fact, when I’ve caught myself thinking in these past few weeks, “How much longer until school starts??”  In the past, I hadn’t had those thoughts until the week or so before school starts, not a week or so into summer!!  🙂

Anyway, for the moment, I wanted to give a brief medical update.  There’s not a lot to report, but this seemed like a good place to start.  When I saw the rheumatologist in late May, as I said before, he tested me for all kinds of things (nine vials of blood’s worth–and, we recently found out, over $2,000 worth!!–of things!  We are, more than ever, grateful for insurance!).  I didn’t even know what all he was checking for, so I asked him after the fact.  He responded with the following list:

Leukemia/myelodysplasia
Anemia
Thrombocytopenia
Gout
Renal insufficiency
Glomerulonephritis
Inflammatory disease
Diabetes mellius
Thyroid disease
Hepatitis A,B,C
syphilis
antiphospholipid syndrome
Systemic lupus
rheumatoid arthritis
scleroderma
Sjogren’s syndrome
polymyositis/dermatomyositis
spondyloarthropathy
Behcet’s syndrome
monoclonal gammopathy
vitamin D deficiency
“and maybe a few others.”

Seems like that’s enough to me!!  Only one of those (CCP antibody) came back with a slightly elevated number, and after having that specific blood test redone a few weeks ago, it turned out that it had been a false positive.  So as far as anyone can tell, none of the above conditions/syndromes is causing the ongoing fatigue (and headaches, and brain fog–symptoms which are not as readily apparent to others but which continue to affect me).  That seems like good news!

Dr. Sibbitt (the rheumatologist) also recommended a sleep study.  He didn’t think sleep apnea was likely, but he wondered if I might be experiencing something called “hypoventilation” when I sleep (meaning I don’t breathe deeply enough while I sleep, thereby causing my brain to not get enough oxygen at night….).  It turns out our local medical center has a sleep center tucked away in the far corner of the top floor, and in fact, I have an appointment to spend the night there…tonight (July 16)!  I didn’t sleep very well last night, and I’ve been advised to refrain from napping today, so I’m hoping that I won’t have any trouble falling asleep there tonight, even with whatever wires and cords are attached to whatever body parts are deemed necessary!  Time will tell whether anything helpful is discovered….

In the meantime, I am basking in the quiet and relative solitude of this week–my kids aren’t here!!  One of them is away at camp this week, and the other two are with my parents and sister in upstate New York for several more days.  After 6 1/2 weeks of summer vacation, with nearly 3 of those weeks spent traveling to see family, I am MOST appreciative of and grateful for this little period of down-time!!  For the most part, I’ve just hunkered down, rested as needed, kept to myself, and gulped down the quiet like a cold glass of water on a hot day!

And speaking of resting, I think I will go do just that.  It feels good to be doing a little writing again, and I know I have some more reflection-type thoughts bubbling around in my head and heart that will want to be expressed sometime in the near future.  For now, though, I’m going to let them keep bubbling in there, and go rest up for my exciting night of sleep!  Stay tuned!….

Gluten-free: To Be Fair…

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Okay, so I was not totally fair, nor completely honest, in my earlier post about my new gluten-free diet feeling like a deprivation diet!  I neglected to mention that I have some very good resources right here in my little corner of the world, in the form of friends both young and…less young… 🙂 …who happen to not only survive but thrive in a gluten-free existence!  One of them, in fact, called me within minutes of reading my email about my new “venture” into the world of gluten-free eating, to offer her support, encouragement, strategies, recipes, and more!  A few days later, after hearing about how I’d eaten lots of peanuts and raisins and fruit and cheese (and not much else!) in those first few days, she assured me that there were lots of good options in the gluten-free world, and that there was certainly no need to “suffer”!!  Then, just a few hours later, in a wonderful act of kindness (and in an effort to lend credibility to her claim–a successful effort, I might add!), she brought me a “care package”–some of her homemade gluten-free bread, several of her homemade chocolate chip cookies, a little baggie of Cinnamon Chex (it turns out that most of the Chex cereals are gluten-free!  I’d never noticed…), and a few each of two different types of store-bought GF cookies.  So delicious!!!!  Yum, yum, and more yum!!  “Deprivation” was certainly not a word to be associated with any of those treats!  🙂

On another occasion, another friend presented me with an entire loaf of gluten-free bread–especially tasty when toasted and smeared in crunchy peanut butter–which she had bought at our local grocery store, along with a lovely homemade gluten-free meal–“Mediterranean Quinoa Salad,” which was delicious and which I ate for several days!

Another time, a different friend emailed me a recipe for some flourless cookies, as well as a couple of other flour-free snacks.  I made those cookies right away–about eleven dozen of them!!–and ooo-weee, they are good!!

And on yet another occasion, yet another friend surprised me with yet another loaf of gluten-free bread, this time purchased from a bakery in Albuquerque.  I tried it later that day, toasted, with a little mustard, turkey, cheese, and spinach….Delicious!!  It was the first sandwich I’d had in the past month, and wow, was it tasty!!

And yes, there is gluten-free bread available for purchase at our local grocery store, as a good friend pointed out, as well as a surprising variety of other foods, and they’re even marked on the shelf as such!  They have their own little “Gluten-Free” tag, making it easy to spot.  Who knew?  Certainly not I…until now.  At our local grocery store, which I already was a huge fan of (not to mention a regular supporter of!), there are GF (that’s the standard abbreviation for “gluten-free” for those of us “in the know”….Go figure!  🙂  ) crackers, pasta, cookies, cereal, soups, cake mixes, baking flour…and more!  More, I’m sure, than I even realize.

So, why hadn’t I hadn’t broken down and bought my own loaf of GF bread when it is readily available?  Why haven’t I stocked my pantry with GF pasta and cake mixes and cookies?  Well, for one reason, holy crap, is it expensive!!  Anything specifically made “gluten-free” when it’s otherwise, “normally” not–it seems to me, in my brief foray into this world–is realllllly expensive!  For example, I typically buy a 5-lb. bag of regular, white (wheat) flour for $2ish, maybe $3.  A 1-lb. box of GF all-purpose flour cost me $4.69!!!  And then I went and tried to make some scones with it…and they were just baaaaaaaad!  Wow, were they bad!  Straight into the compost bin they went!  And I’m not one to waste food!!  But these were so bad…..  😦 😦 😦  So yes, GF foods tend to be a good bit more expensive, at least in my limited experience thus far.

Another reason, though, I suspect, is my belief that this--like the fatigue–is just a temporary situation for me.  Just an “experiment.”  I suspect that I have not jumped in with both feet because I have not anticipated that this will be a lifestyle change I will have to make, for life.  I have been willing to try it for the month suggested by my friend who happens to be a physician, doing my best to avoid ingesting gluten and finding new, flourless-yet-tasty recipes to try to cook for my family so we could all eat the same things.  But I have not been ready to try to substitute all things with wheat flour for things similar but wheat-free (bread, crackers, pasta, cake mixes, etc.).  For the sake of this “experiment,” it’s been easier for me to just avoid most things with flour in them, wheat, rice, or otherwise.  But man, that turkey sandwich was good….!  🙂  But I am not yet ready to claim being gluten-intolerant as a part of who I am.

And while I am a few days shy of finishing out my GF month-long trial, so far I can say that there has been no noticeable difference in my energy level.  Am I disappointed that it seems that gluten is not the culprit?  Not completely.  While it would certainly be a relief to find out that that is what has been causing the fatigue, I think I might rather keep on with my daily naps and not have to think so much about what kind of flour I’m eating!!  🙂  I’ll give a more definitive report in another week or so…. Stay tuned!

Gluten-free??

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A couple of weeks ago, on April 8, it was suggested to me by a medical professional (an MD, who also happens to be a good friend!) that I might try going gluten-free for a month to see if that helps with the fatigue.  Now, it just so happens that she and I were out socializing when she suggested it, and in fact, we had met at a local brewpub to celebrate her birthday!  I had already decided to get a big ol’, juicy green chile cheeseburger, and my mouth was already watering for it, when she told me I should try going gluten-free….”What?? Does that mean I can’t get the bun with my burger??”  “Nah.  Just start tomorrow.”  🙂  And so I got the bun, and enjoyed it even more than I would have otherwise, knowing it was the last one I would be eating for a while….

But I did start the next day, even though it was the middle of Spring Break, even though I knew that my family and I would be heading down to Albuquerque for a few days later in the week, and staying in a hotel where they have the best, gooiest, almost-Cinnabon-esque cinnamon rolls on their breakfast buffet…that I wouldn’t be able to eat!…and where we’d be eating out at least once at a New Mexican restaurant where they serve delicious, warm, pillow-like sopapillas…that I also wouldn’t be able to eat!…..  But hey, it was better for my waistline, anyway, right?  And besides, I’m always up for a good challenge!  And I decided that starting a gluten-free diet while on a Spring Break trip would be as good a challenge as any!  🙂

And so on April 9, 2014, I began….. I figured I might as well give it a try!  Stay tuned to hear how it has been….  🙂

 

The newest headache!

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So, I’ve gone gluten-free for two weeks now, and you might think that that, in and of itself, would be my “newest headache.”  In fact, it is NOT.  That hasn’t actually been as awful as I was anticipating!  I do miss eating bread, crackers, scones, coffee cake, crusts from my kids’ unfinished sandwiches, etc., whenever the mood strikes and/or the opportunity presents itself.  BUT, it has actually been a great opportunity to try some new recipes, whether specifically gluten-free or just “happenstance” (i.e., “regular” recipes without any “gluten-full” ingredients)!  And I probably have been eating more healthily(?) in general–more fruits, more veggies, fewer processed snacky things….

No, the newest headache I’ve been dealing with is just that–a headache!!  Well, to be more accurate, lots of them.  Ugh.  Seems like they’re occurring almost daily these days.  Not the excruciatingly painful, migraine-esque kind, thankfully, but the kind that you wake up with and that just stays with you alllllllll day.  I joked with a friend that perhaps I was going through gluten withdrawal*… and then I wondered if there actually could be anything to that!  After doing a quick Google search, guess what?  It seems that some people actually do experience headaches, and/or a variety of other symptoms, when they “quit gluten” cold turkey!!  Whaddya know??  The fun never ends!!

So, I really cannot tell yet whether the absence of gluten in my diet will have any effect on my fatigue (there’s been no noticeable change yet, but I’ve been told it generally takes a few weeks before any change would be noticeable…), but I really am not liking what seems to be its effect on the rest of me!  I’ll give it another couple of weeks, though….

And yes, God is still Good!  🙂

 

*I am also willing to consider the possibility that this increase in the frequency of headaches that I’m experiencing could be related to my having done too much over the last 2+ weeks, with Spring Break then Sarah’s birthday then Easter, plus Ryan and John starting baseball last week and each practicing two nights each week (two different nights!)…. Perhaps my body is saying, “Too much!  Too much!  You may be well but you still do not have as much energy as you think you do!”  ??????

Another medical update

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Briefly…I saw Dr. Madhavi Garimella this evening (3/27), an endocrinologist here in Los Alamos (as a side note, I liked her a lot!  Very personable, very thorough, seemed to be very knowledgeable.).  After reviewing my chart, listening to me describe what’s been going on, and doing a quick but thorough physical exam, she seemed to be of the opinion (as am I!) that nothing too terrible is going on, and that whatever is going on (likely brought on by something viral) will, eventually, resolve!  🙂

She did give me a lab order to have a few more blood tests done–to check the following levels:  T3 and T4 (thyroid-related), vitamin D, vitamin B12, FSH and LH (hormones), and cortisol (hormone related to the adrenal glands); and to check for celiac disease.  Her expectation is that the results of all of those tests will be within the normal range, and I will just have to continue to let the fatigue run its course.

She asked if I felt like I’ve made progress since this all began, and I told her that I am feeling MUCH better than I was in, say, October and November, that I’ve definitely made progress, albeit slowly.  She smiled and said, “Hold on to that!  And rest when you need to.  You’ll get better.”  I kind of wanted to say, “I don’t need to ‘get better’–I can be well in the midst of this…. I just don’t have the energy I used to….”  But I didn’t.  Those thoughts are still being formulated within me….  Sometime I will get them formulated well enough, and written down, and will be ready to share them…. But not quite yet.  🙂  

I will add a new post once I’ve had the blood work done and received the results, but I, too, am expecting that everything will be “normal.”  Now, it’s time for me to go to bed.  🙂

Medical update (sort of…)

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My upcoming appointment with Dr. Monica Snowden, a rheumatologist here in Los Alamos, has been cancelled, due to “a scheduling conflict”–i.e., Dr. Snowden has decided that she cannot currently accept new patients.

I had been wondering what benefits might come from seeing her, since all the blood tests I had for a number of connective tissue diseases as well as some autoimmune conditions had come back negative.

I had even been considering canceling the appointment….(I’m kind of ready to be done with doctors!)

I guess the decision was made for me!  🙂

And besides, I continue to make progress–no naps three out of the past seven days, and 3-mile walks a couple of times with no perceived ill effects!  Yay!

But that’s all for now…I need to go lie down.  🙂