Monday, December 30, 2013


And yet.. I've done it so many times I can recite them from memory, even those horribly long and hard to pronounce names.

Wednesday, December 18, 2013

A Quote For Fibros

This is what I need, including your love.  And I need all of it in great and endless supply.

The Voice

Morgan Freeman has one of those amazing voices that you can hear inside your head when you read a quote by him.  I often times read this one just to hear his calm strength in the words that I try to live by each day.

Monday, December 16, 2013

All I Want Is A Cure.. And Good News

Last year at this time, they found a tumor in an adrenal gland that sits just on top of my right kidney.  The tumor was approximately 2.2 cm big.  When I heard about the discovery of it and the size, I was frightened.  I may have even panicked a little bit over the next few weeks as they scheduled me to see an Endoscopy doctor and to have a lot of urine and blood tests done - most of which had to be sent away to specialized labs.

Being a control freak and dedicated to knowledge of my own health issues, I demanded a print out of every lab test they were sending away.  I wanted to research them at home.  There's a great site that explains lab tests and I'll share it here:

If you have the actual lab test name from a print out, you can find it on the list that site provides and it will educate you about the test, how it's performed and why.  Pretty good information to have, in my opinion.

So, I read up on the tests and waited for results to come back.  When they did, everything was within normal ranges.  That meant that the tumor was not cancerous and just as important, it was not active. Because it rests in one of the adrenal glands, it can cause serious, threatening changes in some of the hormones/body chemicals.  

I saw the doctor, he verified that things looked good and said we could wait a year and check it again just to be sure there were no changes.

Last week, I went through that same battery of tests.  The results from those far-flung labs are just now trickling onto my chart at the clinic.  Of the three tests presently back, two of them have abnormal levels.  I'm worried and trying not to be.  I spent weeks last year agonizing over this, talking about it, analyzing every possible outcome and for what?  I was fine.

So.. why borrow trouble?  I'm smoothing my ruffled feathers down and waiting for a call from the doctor or nurse.  I see him in two weeks but I called and left a message, basically saying - Have you seen the results yet, are they bad, call me!

Time will tell.  In the meantime, I'm saying a little prayer that it's not bad news because at the risk of sounding pitiful, I have enough things wrong with body to deal with.  Please God, give me a pass on this like you did last year.  A Christmas present of an inactive tumor would be great.  Amen.

Thursday, December 12, 2013

How Do You Hide?

I love this time of year, fall has just finished it's pageantry of color and beauty and even the melancholy that comes along with watching nature die is welcome as it makes me feel peaceful and reflective.

And then come Thanksgiving and Christmas, which bring me to the reason for this post:  How do I hide being sick around a lot of people gathered together to celebrate the holidays?

Maybe you're asking yourself - Why hide it?  But I think that most of you won't question it because you know why.  We're proud and stubborn.  We don't want pity.  We want to act and look 'normal'.

I don't want people to notice the dark circles under my eyes so I apply a dab of concealer to camouflage those.  Some blush on my cheeks to bring color to skin that has turned pale.  Mascara to brighten eyes dulled by pain and exhaustion. 

I'm sitting here at my desk, reading what I've written thus far and it strikes me as so plaintive.  A whining tutorial on how to use makeup to turn sick into a happy clown that hides behind the created mask.

I have never wanted to be that person - Poor, pitiful me.  An incessant monologue on having a disease.  But the forums and chronic illness blogs, they are our outlet.  Our place to spill the anger, confusion and sadness so they don't poison us against ever finding hope, happiness and the good days.

It's now days after beginning this post and I return to it too early in the morning but it's silent and I can concentrate on writing.

Back to the subject at hand, how do we hide being sick from extended family & friends?  As mentioned above, we use the magic of makeup - Cover Girl is a fitting name and pun.  We do something with the bedhead mess that is our hair.  And we get the hell out of pajamas and into clothes that we pray won't hurt to wear.

We try to be aware of when we grimace or cringe and stop those reactions to not only our normal pain but the hugs and touches of exuberant, holiday-happy people.  When we need a minute or five to give into the agony or push past exhaustion, we find a  quiet room, usually the bathroom, to be alone and simply breathe.

When sensory stimuli like the noise of too many people packed into a too small space, the smells of food and perfume, blinking Christmas tree lights all become too much, we find the bathroom again and drink in the dark and quiet.  While there, we can reapply lip gloss to add more color to the pallor of our face. When you have a chronic illness or disease, you learn too many ways to hide the ravaging effects of it.

We are hardest on ourselves so we need to realize that being sick doesn't make us less of a person - less needed, less worthwhile, less loveable.  I wrote a blog post months ago about trying not to be our own worst enemy when we're ill.  I believed in it then and I still do and yet, it seems the most instinctive thing to keep all of it some terrible secret.  As if we're guilty of something.  To hide the physical manifestations of our disease so that we can pretend that we're fine.

It is hardest during the holidays.  By the very virtue of what they are and entail, we struggle to keep up.  Keep up with preparations if we even dare host a family event.  If we go to another location to celebrate, we're exhausted by the travel.  We become, quite simply, overwhelmed on every level - physical, mental, emotional.   And inevitably, all of that turns into a flare that we can only conceal from others by escaping the situation entirely.

We go home and climb into bed.  We might cry or we may be too tired to squeeze out the tears so we sleep instead.  Tomorrow is a new day to start over, to eat left over ham and smile over that thoughtful Christmas present from someone who tries to understand - a book, a DVD, warm slippers, brand new, pretty pajamas.

We're a little bit sad but we know we did our best to hide the worst of it.  We joined in and celebrated the holiday the best we could.   We made memories for ourselves and those we love.  In the end, that's all that really matters.  It's worth suffering for.

Tuesday, December 3, 2013

The Brother & I Have Met

I know it's morbid humor but it's also true in my opinion and it makes me laugh.  Laughter gives us strength to keep going.

For My Love


Monday, December 2, 2013

Master Class Monday

One of the things I enjoy doing is roaming around to other Fibro/Chronic illness blogs to see how people are handling the many issues that come along with being sick.  It makes me feel less alone - like there's a community out there, a family of sorts that knows exactly what I'm going through.

Often times, it amazes me how similar our stories are on every level - physical, emotional, mental, financial.  How our families deal with it, our mates and children, parents and siblings.  The symptoms that sometimes make us feel as if we're losing our minds but then we read those other blogs and realize that we're not, it's just another part of having an illness.

Oprah has a show called 'Oprah's Master Class' and the premise is that she has famous people from all areas - music, acting, writing, political, news, etc. - discuss things they've learned about life simply from living it and from those they surround themselves with.  I find it fascinating and if you would like to watch some clips from those episodes, they're on Youtube.

When I find an especially good blog post, I want to link to it here and point our community towards it in case they havn't yet stumbled upon that blog.  Similar to Oprah's master class, I feel like those who live with chronic illness are the true 'masters' within their knowledge of it.  The day to day experience of living with a disease or multiple, concurrent diseases provides us with a level of understanding that not even physicians can claim.

In a perfect world, I would have the energy and be able to commit to doing a once a week segment - Master Class Monday - where I provide a link to a blog post that I've found to be exceptional in its ability to impart wisdom and a better understanding of chronic illness, no matter what its name is.

We all know how hard it is to keep those commitments though, simply by nature of being sick.  I'm going to do my best so please be patient with me if I miss a Monday here and there.  And feel free to email me at if you find a blog post that you think should be a Master class!

With all of that said, here is the blog post that inspired this idea:

One of my favorite blogs to read is written by Chronic Mom.  She has a great way with words and I feel like she invites all of us in to really feel and learn from her experiences.  Today's post was especially good though and I want to share it so click here to read it!