Thursday, September 30, 2010

Merciful Urban Youth, Candy Corn and Percocet

I cried in public for the first time today. Didn't mean to, didn't want to. The tears just came.
Even the gang-bangers gathered in the parking let me pass quietly.
People leave you alone when they think you are a crazy person.

A long time ago - seemingly another lifetime - I had 50 fewer pounds, nearly 20 fewer years, a short skirt, high heels and flowing strawberry curls... Anywho, I was passing the Nankin after a few late night refreshments and some urban youth thought they might like to have my briefcase.

I looked the biggest of the young men squarely in the eye and told him it was haunted. It was odd how quickly they scurried away after I hurled my beautiful case to the sidewalk about ten feet ahead of me started yelling "HEY! YOU BIT ME!" interspersed with random Norwegian swear words. Something about how we had talked about proper behavior in public, more Norwegian, etc... Kicking the poor thing against the wall a dozen or so times added to the effect. (Luckily, those were the days before laptops.) When I turned away they were chatting amongst themselves about the " _____ crazy white lady." I picked up my case and muttered loudly in Norwegian all the way to the ramp.

This time, the drama was nil, and consisted merely of staring straight ahead with tears streaming down my face. Not outright sobbing, just a simple overflow of mind-shattering pain. One of the young men actually looked like he felt sorry for me, and nodded a sign of respect. I half-smiled and he let me pass, purse, cane and tears intact.

I hobbled slowly into CVS. Candy corn and percocet, the dinner of champions. As you can probably tell by my super coherent writing (not), the percs are doing their job, and this batch of candy corn is the best I have ever had.

We adapt to whatever our 'normal' is at the time. Plus, I'm guessing the 'normal' CVS at Snelling & University ... well, I doubt they even noticed.

Wednesday, September 29, 2010

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.

Monday, September 27, 2010

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.

Wednesday, September 22, 2010

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.

Saturday, September 18, 2010

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.

Tuesday, September 14, 2010

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.