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.

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.

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
Umami
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.

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, http://www.ednf.com, 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
http://www.commongroundmeditation.org
Common Ground is a meditation center located in Minneapolis, MN.

Dr. Kirmani - Geneticist at Mayo Clinic, Rochester, MN - my geneticist and EDS specialist
http://www.mayoclinic.org/ehlers-danlos-syndrome/ for more info

Ehlers-Danlos National Foundation - Types of EDS explained
http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969

Margaret Foote - a Virginia blogger with EDS, with whom I soon hope to connect
http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendID=60068651&blogID=258675651&MyToken=e2fa65ba-51b0-4154-81a7-0100b901e9ac

Everspring Health Cooperative - Dr. Blaska - my acupuncturist
http://www.everspringhealth.com
http://www.everspringliving.com


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.

Billy, don't be a hero...

You know when you wake up with with a ridiculous song in your head, it's just going to be one of those days.

After writing incoherently into the wee hours of the morning about a military conflict issue, 'Billy Don't Be a Hero' was the annoying song my brain's jukebox of random tunes selected. I haven't heard that song in years...

Clearly, what we struggle with in our conscious mind hangs around for a while in the subconscious, dinging around trying to make sense of it all.

Wonder what the song will be tomorrow, as a new MRI showed that one of the arthritis-induced bone spurs on my ankle snapped off at some point in the last week and hunkered down between the bones in my ankle. Little bugger (maybe the size of a pea) apparently is like Heed - spherical, but quick pointy in parts.

The pointy parts are amassing a nice glob of fluid around them and shredding the neighboring tendons. Nice. Doogie Doc said, "Hell yeah, if I were a tendon I'd be pissed too." I liked him immediately.

So add to my collection of braces a fancy ski-boot-clippy number, all stylish in black and grey.

Now we play the waiting game for six weeks to see if it floats its way on outta there. Hubs is taking the tendon route and is livid that we're not going in immediately and digging it out.

I have a mixed bag of feelings about that, and about the future. Trying to keep up appearances that I am okay with all of this change is becoming more difficult with each new surgery. At least I'd get a chance to wear that cozy Bair Hugger again.

Just as I finish typing, a shiny silver hair drifted onto my screen. That kinda says it all.

Oops! I couldda had a C8!

Dang head stem. If someone told me that my head's not screwed on straight - they'd be right.

My neck decided to go ahead and age 30 years ahead of the rest of my body.

The doc said it's like trying to balance a bowling ball on a -35 degree angled post. Superb analogy, eh?

Here I sit, ol' bowling ball permanently fused forward like I'm waiting for something. Godot?

The problem comes in that the vertebra that is most affected is the C8. Don't worry, I had no idea what that meant either... Just don't ask me to hold your baby or Fabergé egg collection. Definitely not a good option. That little bony bit at the base of my bowling ball pole holds the nerves that control the hands.

Yup, I'm a dropper. Just randomly, the signals coming through the 8 decide to detour to goodness knows where, and my hands just release. Thank God Dexa over at Kowalski's in White Bear Lake just happens to be the Queen of Cool. She barely batted an eye when I dropped my basket containing white-hot Minestrone, a full pint of blueberries and some schmancy expensive homemade Graham crackers into the shiny-new cheese case display she was showing me.

Aside from spilling nearly every glass at the table when we dine out, I can no longer tell which finger is which when putting on gloves. Guess I'll have to make the move to mittens this year... I'm considering getting ones with the string. I always wanted those as a kid - right around the same time I was famous for my Angus Young impression.

The Blue Streak

My new ride arrived today. The irony of the name is not lost on me, nor I'm sure the other rolling souls who travel on The Blue Streak.

One swears up a... Which I did during a practice ride when my thumb and the frame of the simple machine met the solid oak doorframe to our kitchen. The color is, of course, a completely obtrusive bright blue. Chosen, perhaps to be as obvious as possible to others while one streaked down some previously unforeseen hill or HC ramp.

The arrival of the wheelchair has not caused as much internal strife as I imagined. Perhaps because I think it will be only an occasional tool used when absolutely necessary. Even as my new bulging disk and ankle burn sharply through the cocktail of pain meds, denial is still only a river in Egypt.

My mom has taken the news of the chair purchase much harder than I have. Her stubborn German determination keeps her walking on ankles, knees and hips long dry from loss of supportive tissues. She views walking as a gift and boldly refuses use a cane, even though each step causes her to grimace. It is the same determination that my grandfather had as an octagenarian whose heart was only working at 10-15% efficiency in the days before he passed. He insisted he felt fine.

I remember my denial of his impending death during my last visit with him in the hospital, where I even joked that the oxygen mask contraption he was wearing made him look like a frat boy with a bra on his head. We laughed long about that. That is the last living memory I have of my precious Grandpa.

Perhaps denial is a family trait that I have inherited, through a long line of strong German farmers. So you fall and nearly rip your nose off (uncle) - 'tis but a flesh wound - tape it on with duct tape and get back to work. So you have Stage IV breast cancer that will ultimately call you home within the month (aunt) but you still attend the party. Certainly one never talks about the affliction! This is where I peel away from the norm.

With medicine's luck and God's great mercy, the Blue Streak and I will travel many roads together.

We are headed this weekend to the Ren Faire, which ought to be a real trick with the coming rains. The greatest gift that I will have on that trip is my little girlfriend, Analise. A woman far beyond her nine years, she isn't mortified by my limitations. At Game Fair, she held my hand by holding my cane. We hobbled proudly, her hand over mine.

Maybe there is some lesson to be learned in her unconditional kindness and caring. At the sage age of nine, she sees in people what the rest of us have forgotten. Behind every cane, walker and wheelchair there is a person that somebody loves, and isn't ashamed to hold their hand in public.

The View from Butt-Level

I have a whole new appreciation for a child's viewpoint. You can't see what's ahead of you, someone is leading (or pushing) you wherever you go, and the view really isn't all that great. The world becomes a sea of backsides.

My right ankle recently decided to join the EDS party, and so we are now looking for wheelchairs. It's really the only way we can envision being able to do the things we used to do that require more walking than a trip to the grocery store.

As I watch my bony, crooked fingers type, I know that I won't be able to roll myself more than a few feet, and I will be dependent on a pusher. I worry what other things will evaporate from my repertoire of independence, and am starting to realize the implications of this disability thing.

An email from my awesome doc at Mayo confirmed that I should begin the process of applying for permanent disability license plates. It's hard seeing your future in the cold glow of the computer screen.

So I think I have my new ride picked out. It's a snappy little blue number.