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.

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

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.

Morning Glories and Ankles

It's a crisp October morning; the morning glories that sprawl across the fence have stopped their ritual of closing at night. Even flowers tire of the things they are genetically coded to do.

My appointment this morning is to discuss the breakdown of my right ankle. I read the doctor's report of his plans for this latest repair. Another surgery, another temporary fix.

What I thought would be a simple scope plucking of a single bone spur is really a full open, replete with a bone debriding of where the bones meet the ankle joint, somehow fixing the the two tendons that have split and are continuing their travels up my leg, and fishing out the multiple little spurs that have broken off and are causing the mess.

With EDS, we don't always heal properly, and this concern is why DoogieDoc wanted to wait - to talk to other docs that have done multiple previous surgeries on me to see what he was getting himself into.

To add to the fun, my precious little Beagle Bassett Bella is having surgery today as well, to remove mysterious lumps that are popping up on her little torso. I forgot about that - how could I forget that? Today is not a banner day.

My full-on breakdown and release of emotion yesterday didn't do the trick, and I worry that my outward PollyAnna attitude about all of this is starting to fade. I worry that my fix-it-all husband will become increasingly frustrated with a wife he can't fix. I am very concerned that my Mom will worry herself into another heart attack, as this will not be the end of the EDS battle.

My knees have both already lost their menisci and my shoulders crunch with the slightest movement. My left ankle tendons are tearing up my leg too - I can feel that, but like a child hiding a visit to the cookie jar, I am hiding that fact from others, and worse, myself.

I am so scared, and like EDS, there is no cure for that.

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.

This is who I really am.

I am coming out today, and coming into the transparency I preach about in life and in social media.

I have what we in the pain community call "invisible pain." We look normal - whatever that is - we act normal and we paste on smiles and a happy countenance when we are out and about. Then we go home and load on icepacks or heating pads, get out the support braces, and come into our "real" selves and sometimes just cry.

There are tears that flow and we don't even know that we're crying, although most of the time they are tears of loss for the things we used to be able to do, for the things we won't ever be able to do, and for our families that know the reality and cope with this on a daily basis.

In my case, I was recently diagnosed with Ehlers-Danlos Syndrome. Yeah, don't worry if you've never heard of it, it is a rare collagen disorder that hits people with differing degrees of disability. What it means is that, as my Rheumatologist so gently (not) explained it, is that if our bodies are bricks and mortar, my mortar is crumbling.

My spine is collapsing, and all but two of the lovely cushy disks I had in the past are either bulging, collapsed or in the process of collapsing. The disorder causes my fingers and hips to randomly dislocate for lack of tendon strength, and my right hand is pulling apart - literally. The tissue that held it together for 40 years has dissolved, either through a bajillion corto shots or simply the disorder, and many days, I just tape it together.

Sports tape, braces and canes have become my best buddies.

I have been wholly and undeservedly blessed with the most amazing Mom and husband who understand the tears, the loss and the frustration... and share in it, as there is nothing that medicine can do to stop the decay. The disorder is not curable, only managable through a host of pain meds, shots and potentially fusing of particularly fussy bones.

My graduate degree was chosen out of crazycoolness, and out of knowing that I need to find a career that doesn't depend on my ability to walk or move around much. My mind is fully intact, but my body sometimes doesn't cooperate and move as the brain directs. Thank God for computers and wireless.

Telling this to whomever choses to read it has been a decision I've had great struggles with. Many of my Twin Cities social media buddies have seen the braces and canes, and only a select few know what's really going on. Joel E. Carlson, bless his heart, was the first person I told. His confidentiality has been priceless.

Coming out of the chronic and incurable closet is difficult. It means that my many pairs of comfy golf shoes may only see a ride in the cart, that my clubs may become useless as striking the ball and swinging my arms has resulted in past spontaneous dislocations. It means that we had to get a wheelchair for the State Fair, and while my niece loved the ride and thought it was fun, the looks of pity and wondering why a 40-year old who looks "normal" would be in a wheelchair were cutting.

When you see me out and about, please just understand the cane and the hand braces. It's okay. I'm okay and the same person you've met, just now the person who is more honest with you.

I have decided to launch my business wholeheartedly this Fall, as the realization that sitting at a typical work desk, or having a job that requires more than basic walking may be too much for this new body of mine. Being able to help people and run a business mostly wireless is the best career gift, and one I look forward to taking advantage of wholeheartedly.

Thank you for taking time to read this, and yes, I am the same person. Just the same person with a fancy selection of canes instead of golf shoes.