chronic illness

In Praise Of Sincerity

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On a very recent Saturday morning, my husband had a phone conversation with a relative, doing the customary catching up.  This person asked how I was.  And that’s when it happened.

My husband answered reluctantly.   He always wants to be careful when talking about how I feel and what is going on, because he sees it as an intensely private thing.  If my life is to be an open book, that decision is mine and mine alone.

His reluctant voice went from casual to solemn.  “To be honest, she’s been having a hard time lately.  There are a lot of scary things going on, with doctors and stuff.”

“Oh,” said Relative Who Shall Remain Nameless. “That’s great!  Fantastic!”

Ouch.

I can’t really put this eloquently, so here it goes.  The truth is, when we endure this person’s company (which is rare, praise Jesus), there is always one constant.  Time spent with him is always short on pleasantries and long on bullshit.  He’s just one of those people we really can’t take seriously, and things like this shouldn’t be a big deal.  But it felt like one.  Illness and the pressures that come with it have a way of doing that.

So for my poor husband, this phone call would be no different than the usual headache.  After abruptly excusing himself and hanging up, he ranted for most of the day.  He was angry because this person didn’t listen.  He was livid because for the first time he opened up to this person, only to get an insult in return.   It took everything I had to stop him from driving to this person’s house to tell him off.

“Consider the source,” I said over and over again, my voice just above a raspy whisper.  But I was also trying to convince myself that it didn’t matter.  Because it did matter.  That sort of thing hurts and hurts like hell; it doesn’t matter how it goes down or who says it.

Apple with book

I’m fragile like that I guess.

Sure, time has passed.  The sharp edge of anger has softened.  And it brought to light undisputable truths.  I value sincerity, more than words can say.  And I cherish the love and support of those I have let into my life, and how they will truly listen to me when I need to talk about the things that aren’t too pretty.

One self-absorbed, goofball relative aside, I am beyond blessed.

We’re human.  We make mistakes.  And from this moment on, I won’t dwell on what happened.  God knows I have caught myself half listening to someone, when they deserved my full attention, a compassionate friend to hear their every word.

All we can do is learn the lesson every single day, and try to be better.

Make it an amazing day, and amazing weekend, everyone.

Energy Crisis

This week I spent one lazy afternoon browsing about two dozen inspirational and healthy living websites.  From a work related viewpoint, this activity is very much part of my job.   Staying on top of what other more seasoned writers are doing and saying, seeing what works for them; all of it helps me be better and find a more effective voice.   From a personal viewpoint, I also approach this activity as a casual reader, hoping to find ways to live better, and enjoying whatever it is my favorite writers have to say.

As I was browsing that afternoon, going through the usual motions, I uncovered a headline that, to put it mildly, was screaming out for my attention.

Energy Is a Key To Happiness.

I read those simple words over and over.   I contemplated their weight and meaning.

Because I, probably more than most, can attest to their absolute truth.

For nearly fifteen years those two very wonderful things, energy and happiness, have been terribly elusive in my life.  Living with autoimmune disease and its symptoms all this time, you would think I would be used to the ongoing energy crisis by now.  But I’m not.  I still haven’t accepted it.  And while it is true that happiness can be tied to countless aspects of our lives, it is in fact inextricably tied to energy.  When you have little to none of it, there isn’t much you can do.  It is hard to go and see and experience amazing things.  It makes it hard to work and play; to take care of loved ones, and yourself.  To keep up with just about everyone and everything.  To enjoy.  To live.

Yes, when you don’t have energy, it sure as hell is tough to be happy.

Being sick has given me a lot of good things, like strength and perspective.  But I long for what it has taken from me.  It’s hard to not feel defeated.

Last week I nearly fell asleep in the produce section of my neighborhood grocery store.  There I was, contemplating apples, peaches and tangerines, and my head started to bob.  My eyelids drooped.  What little physical strength I felt left my limbs quickly.  I was reduced to Jello.   I propped myself up against the cart and slowly wheeled myself in the direction of the check out.  I prayed I would make it to the line, then my car, and then home less than a half a mile down the street.

It was 11 in the morning.

I don’t wake up with the sun and jump out of bed with excitement to face the day like I used to.  If I can fall out of bed before 10 a.m., it’s a really good day.

I feel like the world is passing me by.

I don’t want to feel that way anymore.

Several weeks ago I adopted a much cleaner, nutritionally balanced diet.  There are several reasons for it, some of it kind of superficial.  Our five year anniversary is coming up in December, and when we go away to celebrate I want to feel healthy, and HOT.  I figure a healthier eating plan will amount to at least a ten pound weight loss.  I know this shouldn’t be the primary motivation, because I have much bigger concerns than the extra ten pounds that have been hanging around for a while.  Whatever motivates me first, I am hoping that the nutritional boost of more conscious eating will give me that energy I miss so much.

I’m probably dreaming, thinking food will be my cure, but I still hang on to that hope.

I know people who treat their bodies like a junkyard on a daily basis.  I’m married to one.  Soda, candy and highly processed foods are all over our house.   The good news is I don’t feel a craving for any of it, and I think my healthier approach to food is helping with that.  On the other hand, my husband’s idea of lunch is two boxes of Junior Mints, two chocolate bars, and half a bag of potato chips washed down with three cans of Pepsi.  If he feels so inclined, he may have three hot dogs followed up with ice cream.

And still, he has all the energy in the world.  He works and climbs mountains and does all kinds of things.

I won’t lie.  It’s frustrating.  Not that I want to eat what he eats, because I really don’t.  But I’m much younger than him.  I should feel good and have energy.  I don’t know why I have been burdened with challenged health.   I feel like my body is so tightly wound up, teetering on the edge of a foreboding precipice.  A chance at good health hovers above me, and more of the usual lingers below.  I feel like I have tried everything, and I’m still not feeling better.

But I’m still plugging away, hoping for that day when I can get up with the sun, feeling energetic and beautiful.  Happy.

My days have started with fresh juice; a sweet blend of carrot, beet, kale, cucumber, spinach and green apple.  It may sound revolting and too righteous for some of you, but trust me.  The carrot and green apple make it more than tolerable.  It’s downright delicious.   An easy way to get those super cool micronutrients into my tired cells.

Lunch and dinner can be any number of things:  Greek yogurt with fruit and flaxseed, organic chicken, avocado and beans on a bed of dark, delicious greens, salmon with kale or broccoli, and brown rice on the side.  Maybe sweet potatoes and quinoa for a change.  Or maybe black bean tacos loaded with veggies; cucumbers, tomatoes and peppers straight from my garden.

I’ve been so good.  I don’t want to give up.

I just wish I felt a difference, even just a little bit of energy.  It would encourage me to keep going.  Instead I rely on getting rid of those ten pounds.  That is what keeps me focused.   It will have to until energy finds its way into my life again.

Despite everything, I’m still happy.  I would be happier if I felt good and healthy and strong.  But yes, I’m still happy.

Because of so many good things in my life.

Like love and support, and doing what I enjoy, like writing.

But I still long for the day when I can add to my happiness, when I am without pain and I can go forever with that precious vitality I miss so much.

I feel empowered by one simple fact.

I’m trying.

Photo Sources:

http://mysummertwist.tumblr.com/

http://bippityboppityboo.tumblr.com/

Growth Serums For Long & Healthy Eyelashes

I have a ritual.  Every morning, without fail, I go to my bathroom mirror and study my face.  This probably isn’t the smartest thing to do.  It has a way of messing with my head a little bit.  Usually I am focused on fine lines and dark circles, but I noticed something new a month ago, and it threw me into a borderline panic.

There was a four day build up to my freak out.  I gave it a few days, studying everything closely and wanting to be absolutely sure.   But there was no denying it.  It was true.

My eyelashes were definitely looking stubby.

I can’t have this.

Since being diagnosed with lupus (and secondary fibromyalgia and chronic fatigue) nearly fifteen years ago, I’ve put up with a lot, having to accept what it has done to my appearance.  My skin calmed down several years ago, and by some miracle I have managed to keep my figure mostly intact.  Instead the crisis going on inside of me wreaked havoc on my hair.

The universe was on my side in some ways.  On my wedding day nearly five years ago my hair was long, full and healthy, and at that point I was ten years into my illness.  I am so grateful that I at least looked vibrant on the most important day of my life, immortalized so prevalently in photos.  But three months after the big day I hit a rough patch I never fully recovered from.  And that’s when I had hair all over my pillows, and in my brush and shower drain.

I baby the hell out of what I have left on my head.  But no matter what I do, no matter what products I choose, and no matter how my stylist cuts my hair, it seems terribly hopeless at this point.  I feel like a disaster.

All is not lost.  My hair may be fragile and half of it has fallen out, but my compromised follicles are not dead, just dormant.  If I can get my disease under control for any length of time and take good care of myself inside and out, I can get my lustrous locks back.  Unlikely, but at least there’s a chance.

I’m sure my stubby lash discovery last month is connected to my hair conundrum.  After I came off the ledge and calmed down a bit, I started looking into what I could do about it.  I don’t wear a lot of eye makeup.  Most days I don’t wear anything at all.  And on the days when I actually care enough to put forth some effort, one coat of mascara does it for me.  I don’t have the patience or desire to mess with the other stuff.   But this also makes my lash deficiency even more problematic.  I have counted on my long lashes to make my eyes pop without makeup.

Now what?

I’m sure most of us are familiar with those fabulous, seductive Latisse commercials.  The lash growth progression is amazing and being prescription strength, results are proven.  But like a lot of prescription drugs, side effects can complicate things.  Skin irritation and pigmentation changes around the eye have been reported.  And I understand you have to continually use it in order for results to last.  Continuous use translates to continuous cost.  My mom tried it for a while and it worked for her, but when she stopped her lashes went right back to the way they were.

My concern with Latisse is the cost, side effects are a concern, but secondary.  I believe it comes to about $130, maybe more, for a two month supply, and of course being cosmetic it isn’t covered by insurance (unless your reason for using it is glaucoma related, what the drug was originally marketed for).  My mom had no problem covering the cost, but she is in a much better position than I am financially.  I could swing it, but I can think of other things I could spend that $130 on, like acupuncture or other things I need to feel good.

I settled on two over-the-counter lash serums, and honestly I see a big difference in how my lashes look.  I am thrilled with the results.  First I tried  NYX Grow Lash Serum.  This is a mild product with zero irritation (at least for me) and I applied it at night after my contacts came out before bed.  It probably wasn’t necessary for sound results, but I drenched the roots of my lashes both top and bottom, and brushed the serum on to the length of my lashes as well.  Within one week I noticed my lower lashes were much longer, and my top lashes weren’t far behind.   I also bought NYX Long & Full Lash mascara formulated with the growth serum so I could get the benefits during the day with my mascara wear.  I wasn’t as impressed with the mascara product, but strictly from a cosmetic standpoint.   I expect a mascara to wow me and it really didn’t make my lashes look full and thick, though I do think wearing it during the day benefitted me in my lash growing goals.  The NYX serum (.15 oz)  was about $22, the mascara about $13 (.24 oz) at Ulta.  Ulta often has sales such as buy-one-get-one (same brand) for 50%.  Also there are coupons and other discounts if you are a participant in their points program, so cost can be substantially lower if you shop at the right time.  I did exactly that.

Me after using NYX grow lash serum for two weeks. I am wearing one light coat of Clinique Naturally Glossy Mascara just so my lashes are more obvious in the photo. The Clinique mascara creates a lighter, more natural look, it isn’t overly lengthening or volumizing.

My other eye, with one light coat of Clinique Naturally Glossy.

My curiosity was getting the best of me, and I wanted to try another lash enhancing product.  The next one I tried is Smartlash by iQ Derma (.16 oz).  I found this gem at the Dermstore online, and I purchased it for $30.  It is my understanding the price is usually much higher, but I locked in to the introductory offer and will have a new tube sent to me every two months.  While this product is applied the same way as the NYX serum with a small precision brush, it can’t be applied as liberally.  There can be a slight sting if it drips into the eyes, so I applied it carefully to the lash base only, top and bottom, and I made sure my contacts were out beforehand.  I applied it just before bed, though the product literature does say it can be worn during the day, advising users to allow the product to dry before applying makeup.

I am experiencing good results with Smartlash, too.  Now I am less focused on lash length, and now I am noticing new growth and a thickness at my lash base.

I am one satisfied customer without having to resort to Latisse, with its cost and side effects.  I don’t see or sense any issues with using NYX and Smartlash interchangeably, so I’m running with it.

And the best part?  I feel prettier and more confident now that I have my lashes back.

For more information on NYX products, visit: www.nyxcosmetics.com

For more information on Smartlash at the Dermstore, visit: www.dermstore.com/Smartlash

Photo Source (done up eye with false lashes): http://weheartit.com/

Got Love?

When I woke up this morning I knew it was going to be one of those days.  Without even moving I could feel it.

My pain on steroids.

My last completely pain free day is slowly becoming a distant memory.  I fear it will be lost forever in my foggy brain.   Many things about it are still vivid.  It was my honeymoon.  I was in a beautiful, tropical place an entire world away.  I remember the love and other pleasant emotions that sat upon my heart.   Those pieces of it will always be with me.  What I fear losing is the memory of that physical sensation, when I moved my body freely and completely without a twinge, flash or lingering degree of pain.

How do I get away from this daily misery?  My dreams are an escape.  In them I am always strong and healthy, brilliant and wise.  My waking hours are all about managing, hanging on.  It is a hell of a way to live.  And yes, at the risk of sounding morbid, I have rare moments when I don’t want to do this anymore.  I don’t know how I can face another forty years of this.

And that’s when I know it is time to go to where the love is in my life.

I’m lucky, because in my little corner of the universe, love is, in fact, all around.

On this day, I found myself already fighting tears as I hid under the covers.  It was barely 7AM.   Not good.   On most days I can at least get up and around before the emotions hit and overwhelm me.  I closed my eyes and tried to find it; any sensation that would remind me that all would be alright.

And like magic, it made its presence known.

I felt Jack against my leg, warm and soft, his little body going up and down with every sweet breath.  And then there was Grace, sighing quietly and inching closer to make sure we touched.  She found a spot against my aching back.

My children hugging me, doing what they could to take away Mommy’s pain.  A sleepy kiss from my daughter graced my cheek.  My tears were swept away.

A simple moment that had the power to pull me from the brink.

In moments like this I am reminded my life is blessed and beautiful.   My babies, peaceful and happy.  All they needed was me next to them, for me to know I was loved.  It doesn’t take much for a dog.  Healthy food, play, a loving pack, and a soft place to lay is really all they need to be happy.  For us humans happiness isn’t always as easy to come by.  It’s a shame really.  It should be the easiest thing in the world, being happy.

 

 There is more to the lesson than happiness.  Dogs also teach us to love without reservation, to never miss an opportunity to express how we feel, to share the magnitude of what is in our heart.  I am forever grateful for this loving instruction.

Jack and Grace, Mommy loves you.

Photo Source (couple and hand holding paw):  http://weheartit.com/

 

 

 

Hair Apparent

On Friday I had my once-every-eight-weeks ritual.  It was time for a hair trim and style, and the customary 45 minutes in my stylist’s chair.  One may think I would look forward to this opportunity of pampering and beautifying my outside.  On the contrary.  My heart sinks with every sharp snip of the scissors, and with every little bit falling to the floor.  I honestly dread it. 

My stylist is a kind, funny, patient man who has turned out to be a wonderful friend.  Despite my aversion to regular maintenance, finding him was one of the best things I have ever done.  I wasn’t too sure about him at first.  When I met him I knew right away he was straight.  I wanted to run right out the door and find someone else.  I know it sounds odd, ignorant, even bad.  But at that very moment I could not fathom a straight guy with the immense responsibility of maintaining my precious hair.   I imagined my very straight husband taking on the task, then all my straight male friends, and even (oh God) my straight brother.  I shuddered.  But I managed past my doubt, took a deep breath, sat in his chair, and 45 minutes later I had the silkiest, most amazing blowout ever.  So now he can’t ever quit, retire or move, because if he does I will probably have a nervous breakdown.

Here’s the root of my anxiety: every time I sit in his chair, I am reminded of what I have lost.  Three years ago I had one amazing head of hair.  Espresso brown and hitting right at the small of my back.  Thick, lustrous and gloriously dramatic.  I got comments all the time.  When I went for my first wedding gown fitting, my consultant peeked into the secluded dressing room and said “God, Allyson, what exactly have you done to get that hair?”  I didn’t have an answer for her.   My hair just happened.  It was mine in all its long, natural, shiny glory, without any effort or intervention. 

My health changed dramatically, and a few years later my disease finally got around to wreaking havoc all over my head.  My hair is now a good six inches shorter.  I would say I have lost a third of its volume.  Autoimmune disease and fibromyalgia in and of themselves can cause this to happen, but in my case I have severe nutritional deficiencies that are fueling the crisis.  If only I can get all of this under control.  Maybe, just maybe, that long, full and beautiful fairy-tale-princess hair can once again be mine.  It is a possibility.  My hair follicles are dormant, not dead.

None of those happy thoughts really help me now though.  Hair matters.  It has since antiquity.  If it didn’t matter, all of these celebrities and even average people wouldn’t seek out  expensive, mile long extensions and the drama and sensuality they bring.  Long, voluminous hair is healthy.  It practically screams sexy.  It saddens me that it’s no longer mine.  I hate how the thought can ruin a moment, even a day, and sometimes hold me back from loving how I look.

And I really hate how the outside matters so much.  Because most of the time I think my inside is pretty wonderful, and it deserves my recognition.  I don’t know why it has to get lost in my sadness and disappointment, over what being sick has done to my appearance.

I experienced the usual apprehension as I sat in my stylist’s chair, his hands buried in what is left on my head.  I did the customary bitching and crying, and he, with the patience of a saint, dutifully and lovingly voiced his sympathy and talked me off the ledge.  He trimmed just enough.  In the end, and as usual, he managed to work with what I’ve got and made it beautiful.  I left with a silky smooth blowout that fell past my shoulders just right.  I admit I felt amazing.  Even though I didn’t feel that heavy swish of hair breeze past the small of my back.   I may feel it again someday.  I hold on to the hope and possibility.

I know my health is primary, my outside secondary.  Right now I am doing everything I can to eat well and be healthy again.  Hopefully my efforts will pay off, and a calm, sound body will result.  The outside will follow.  And if it doesn’t, I have to remind myself every day of what I do have, what lupus and fibromyalgia can never take from me.  A good heart.  The sincerity of my smile.  My expressive hands and their long, slender fingers.  Arms and legs that work.  Eyes that can see the beauty in this world. 

The wisdom to recognize all that is mine. 

And all that is good.

Photo Source: http://weheartit.com/