Saturday, March 5, 2011

A Deadly Game of Hide-and-Go-Seek

Today is one of those days when I wake up and have to actually look to see if I have forgotten to remove supportive tape from my fingers.

My once graceful, thin fingers have become clubs of clumsy sausage, straining their casings. The sensation of tightness is so foreign, but so real, as I notice that the sides of the swollen, red sausages are peeling as my body seeks to release the surface tension.

Beyond the appearance is the usability issue, which is ever so frustrating. For the second time in a week, the clumsy clubs have dropped nearly full bottles of meds, sending them spraying over the bathroom floor. Today's hide-and-go-seek game was with some small, white caplets...

Now, it's not so much that I mind rescuing these little guys from their cozy spots, nestled deep behind the seat of the toilet or resting precipitously on the edge of the sink drain. (Of course, I must dust them off and dry them out to save for taking later, as controlled substances are not likely to be refilled ahead of schedule, just because they've visited the potty.) It's the sheer gut-wrenching terror of the very real possibility that I will miss seeing one of the little buggers and one of our bottom-feeder dogs won't.

To have this ailment is one thing; to know that the failings of my hands led to the death of one of the only "babies" I will ever know is quite another.

Hopefully I managed to retrieve every last one, as it's time to craft a final paper for a Com590 Crisis Communications class, all the while praying that crisis doesn't hit home.

Thursday, March 3, 2011

Ugh! What happened to you?

"Ugh! What happened to your ankle?!
It looks awful!
I was staring at it when we stretched, and UGH!..."

Just FYI - What NOT to say to someone in your yoga class.

Looking forward to seeing my amazing yoga teacher, most of my classmates, and the UGH! Lady.

Makes me almost want to take a red Sharpie to it and really Frankenstein it up for her viewing pleasure.

Tuesday, March 1, 2011

One Happy, Hot Mess

It's frustrating when you know that your body is weird, but downright scary when you find new things that you thought you were "normal" (that aren't) that make you an even bigger bodyfreak.

Aside from the standard dislocations; my fingers - the left pinky finger is the worst today (being able to slide the small metacarpophalangeal joint so far that the first metaphalangeal slides above the knuckle), the ol' party trick of the past - the amazing dislocating hips (hey now, you dirty pervert, it wasn't like THAT!), and feet that regularly dislo just walking down a flight of stairs, the discovery of newly degenerating tissue in fingers and toes that fold backward at a 90-degree angle (I once thought everyone's did...) as well as feet and hands that fold in half, the long way.

The rate at which bone spurs are forming in the cartilege-depleted spaces between my bones is terrifying. We are waiting to see if my right hand just fuses together in the coming year or two, and my thumbs are so severely spurred that they awaken me with pain in the middle of the night. Most zippers are already out of the question, save ones with very large pulls or ones that I have replaced with OfficeMax binder rings.

The impending loss of the use of my thumbs seems to shear off a certain element of my humanity. Just for fun - and to give a taste of what vexes me these days - here are a few things to try sans thumbs: putting on socks, squeezing toothpaste, writing with a pen, holding a book, lifting a pot from the stove, loading the dishwasher... Fun, eh?

So, you'll see more tape again in the coming weeks. More Oval-8's (braces that keep fingers from flipping backward). I shall have the distinct sweet/pungent aroma of Vera Wang Sheer Veil and IcyHot. I will continue to wear yoga pants and fleece because they have no zippers or buttons; struggle to fight on socks; wear my hair in some messy up-do that doesn't require using a blowdryer and round brush.

So with all the crappiness, really, what can I do?
*I can show my mother how much I appreciate her lifelong love and support by listening and simply spending time together.
*I can be a devoted and loving wife to my understanding and compassionate husband.
*I can hug my dogs, even when there are days when I have little feeling in my fingers and my arms tingle with that icky pins-and-needles feeling.
*I can volunteer - sitting and greeting people whose lives have much greater degrees of difficulty than my own.
*I can appreciate and I can love, and those things can and will never be taken from me.

I may be a smelly, fleecy hot mess, but I'm a happy hot mess.

Thursday, February 17, 2011

I needed this today, maybe you do too...

It has been so long since I have posted, and I apologize. Sometimes life gets in the way.

I received this email today from my aunt, a neatnik who sometimes forgets to love and live in the moment. This made me smile thinking that perhaps she internalized the lovely and loving message, and I hope you do too. Healthy, happy wishes and I promise, I'll be back soon - e


I would never trade my amazing friends, my wonderful life, my loving family for fewer gray hairs or a flatter belly. As I've aged, I've become kinder to myself, and less critical of myself. I've become my own friend.

I don't chide myself for eating that extra cookie, or for not making my bed, or for buying that silly cement gecko that I didn't need, but looks so avanté garde on my patio. I am entitled to a treat, to be messy, to be extravagant.

I have seen too many dear friends leave this world too soon; before they understood the great freedom that comes with aging.

Whose business is it if I choose to read or play on the computer until 4 AM and sleep until noon? I will dance with myself to those wonderful tunes of the 60 &70's, and if I, at the same time, wish to weep over a lost love... I will. I will walk the beach in a swim suit that is stretched over a bulging body, and will dive into the waves with abandon if I choose to, despite the pitying glances from the jet set. They, too, will get old.

I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And I eventually remember the important things.

Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect.

I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.

As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore. I've even earned the right to be wrong.

So, to answer your question, I like being old. It has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day (if I feel like it).

(Wish I knew the author; I'd hug her tightly and perhaps a bit too long.)

Monday, November 1, 2010

Never been a fan of surprises...

Dateline: All Hallow's Eve 3:21am

I am awakened by a pain akin to a knife in my Achilles. This is new, this is unexpected.
One week to the date before my scheduled reconstruction, a new tendon shears.
...and baby makes three.

It's now 5:19 November 1st
I am breathless as I write this, and even the dos percos aren't doing much but making me grouchy and demanding.
I want my surgeon, and I want him now.
The nurses are, at least in theory, trying to find me a spot in an already overbooked lineup of weekend yard injuries.

The urge to vomit is overwhelming, but my body is so tense it won't allow the disgust.
My TENS unit (transdermal electric nerve stimulator) is amped up, but not doing any good.
I can't feel the icepacks.
Not an encouraging sign.

It's like waiting for a call from your first real love, and they aren't calling.
The lump in my throat is choking, and I have to keep reminding myself to breathe.
My phone is my lifeline. Silent and impotent.
The perco bottle is empty.

Please, God, help me.
Please, God, help.

Thursday, October 28, 2010

I wish this for you, without the pain, without the tears.

I have discovered what it's like to have my "normal" create sadness within others, and I don't like it. Good Midwestern Irish/Germans do their right best to make other people feel comfortable, not make them cry.

My precious mamma sobbed this weekend. People I've never met at Mom's church teared up meeting me, and said that they are praying for me; I made my friends Aimee and Cathy tear up yesterday; and all of these tears just break my heart.

How does one adequately lie and tell others that everything will be okay - that things are good? I dread this upcoming surgery, as I have no idea how I will bolt it on through what promises to be exquisite discomfort. I simply can't bear to see more people sad about this.

Several people have asked about how one keeps a positive attitude when their body is literally falling apart before their eyes, and the answer is simple. The alternative sucks.

If the desire to curl up in a fetal ball in a dark room under a mountain of covers feeling sorry for myself ever takes over, I do it. Alone. Yes, that really happens, but who wants to be around that person? I sure as hell don't.

The sunny disposition is not an act, however. It's a newfound appreciation for the things in life I took for granted for 40 years. Don't become the person that makes others cry before you discover truly being present in your life to enjoy these simple things:

The color of the sky in the morning
Shapes that clouds make
The intricate veining of every individual leaf
The amazing softness of your pets
The warmth of a doggie belly
The sound of a bumblebee
Cultivating a garden
Basil and Ginger
The feel of a breeze
Moving a joint without pain
Yoga's Savasana
The breath of a sleeping loved one on your skin
The smells during cooking
8,000,000 other things

It's not focusing on the things I can no longer do that I loved, but discovering the joy in the things I've always had and never realized. I wish this for you, without the pain, without the tears.

Friday, October 15, 2010

Creating a Comprehensive EDS Resource

After my freakout the last two days, I have come to realize that the best thing and only thing that I can do to battle this disease is to create a resource for others struggling with EDS. The numbers of us are so few, and the support resources available are minimal.

Even the national foundation site for EDS,, is sorely lacking in any type of true help, other than descriptive information. If you think you or someone you love may have EDS, this site is great. Once diagnosed, the information dwindles - even the 'calendar of events' is blank for months on end.

Support groups are relatively abundant in Europe and Australia, but access to their sites is geo-restrictive. Chronic pain online groups are available, but also require a selection of maladies that do not include EDS, and state that basically, only those suffering from fibromyalgia, POTS, Lyme disease, and the like are invited to participate. Ironically, these maladies are the very same misdiagnoses EDS people are categorized as having.

Parents of EDS kids are accused of awful things, such as Munchausen by Proxy and child abuse, as their little loved ones come to school with frequent massive bruising, dislocations and broken bones.

Thus, it will now be my goal to focus not solely on my complications, but on providing tangible assistance and resources for people with all forms of Ehlers-Danlos. In the past, I have been a leader in my industry, and I now want to focus those skills on becoming a leader in the fight against my genetic disorder.

I encourage you to actively use the comments section for your own content, suggestions and resources you have used or encountered in your lives. I welcome both Western and Eastern medicine techniques and practices, suggestions for gentle healing yoga, meditation and spiritual assistance, regardless of religion.

For starters, here are some suggestions I have to kick off this new direction of Taping Myself Together:

Common Ground Meditation Center - courtesy of Sarah Faiks
Common Ground is a meditation center located in Minneapolis, MN.

Dr. Kirmani - Geneticist at Mayo Clinic, Rochester, MN - my geneticist and EDS specialist for more info

Ehlers-Danlos National Foundation - Types of EDS explained

Margaret Foote - a Virginia blogger with EDS, with whom I soon hope to connect

Everspring Health Cooperative - Dr. Blaska - my acupuncturist

That's a start. I have a new outlook, and a new purpose to put what I learn about this incurable meanie to work for others.