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.