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Pity Pots and Validation

A friend told me that if all I do is complain, people are going to avoid me. She was a wise friend.

 I have a bone disease called Osteogenesis Imperfecta, OI, and it is a very quirky disorder. Those of us effected by OI have very unreliable bodies.

 The following description has been lifted from the OI Foundation’s website.

 
 

Facts about Osteogenesis Imperfecta
 
Osteogenesis imperfecta (OI) is a genetic disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” A person is born with this disorder and is affected throughout his or her life time.

  • In addition to fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature. Restrictive pulmonary disease occurs in more severely affected people.
  • OI is caused by an error called a mutation on a gene that affects the body’s production of the collagen found in bones, and other tissues. It is not caused by too little calcium or poor nutrition.
  • OI is variable with 8 different types described in medical literature.
    • The types range in severity from a lethal form to a milder form with few visible symptoms.
    • The specific medical problems a person will encounter will depend on the degree of severity.
  • A person with mild OI may experience a few fractures while those with the severe forms may have hundreds in a lifetime.
  • The number of Americans affected with OI is thought to be 25,000-50,000. 
    • The range is so wide because mild OI often goes undiagnosed.

 On Saturday, the van was warming, we all had our shoes on, the dog was dressed and I flung my purse over my left shoulder. The simple action turned my humerus in a strange way and my shoulder popped out of place.

 

With OI, these things happen randomly and unless a bone is poking out, we tend to complete our plans.

 

Having a shoulder out is very inconvenient, a set back. I takes a week or maybe two before it is healed. I complain about these things. They are so random and so stupidly caused that I can’t help but allow myself time to feel both anger and disappointment over the injury. I’ll announce the injury and when I feel sufficiently validated, I adjust my activity level and go on with life.

 

Yesterday, predawn, I shifted in bed, a common area for injury usually related to pushing a blanket away. I swore, settled back in to finish my slumber, knowing I had just popped my right shoulder.

 

I announced this injury as well, making sure people around me knew how unfair I think it is to have both shoulders out at the same time.

 

I use hand controls and I cannot drive, I cannot climb and I cannot hitch my pants up without a lot of maneuvering and thought. So, I am bummed.

 While this post looks like a complaint and no one wants to hang around a complainer, I consider it a momentary self indulging plea for validation.

 When I say both shoulders are out, now, I want a knowing nod, something that conveys, belief. This is an unbelievable disease.

 After some self indulgence, I can go on to the brighter side.

 At least it isn’t an all out fracture. At least I have an activity level that can be adjusted. Thank goodness I have clothes to fight with. And I am thankful that my family gets it.

 So, now, I am going to get off my pity pot, pull up my pants the best I can and get on with life.

 Thank you all for visiting and indulging me. Comments are welcome. Come back in a few days.

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Why Would I Look that Gift Horse in the Mouth?

I was ten months old when I was diagnosed. After my second round in traction for femur fractures, the doctor advised my parents to take me home but try not to get too attached.

A person with brittle bones disease, osteogenesis imperfecta, OI, can look like every other person or they can present as extremely small, distorted and very disabled. It really has no rhyme or reason. It is a collagen disorder and can appear in a family seemingly at random.

OI in all of its extreme presentations has a cluster of symptoms. Besides un-earned and unexplained fractures, a person with OI can have shallow, loose joints, blue scelera (whites of our eyes), spinal curvatures, compression fractures, sweating at rest, and a general blessing of being good with words. Okay, that last part is not on the list. We can also have short stature.

I had over ninety fractures before high school. I spent a lot of time in body casts, arm and leg casts and a few rounds of traction.

I began to walk when I was ten years old, I never got really good at it and when I insist on walking during family outings my darling husband and children spend much of their time waiting for me to catch up. This is where a wheelchair is the best option.

Recently, I found myself injury free. Nothing out of the ordinary background pain was bothering me. I started a new trend of going to the gym on every week-day. On the treadmill I enjoy the freedom of clinging to the hand grips, cane lying along the side, service dog, Havan, on a down stay below the deck and most of all the ground is even and I don’t limp.

I had done 38 week-days in a row and was becoming rather full of myself.

On the morning of my 39th day, two weeks ago Thursday, I shrugged off a feather blanket in just the right way to cause my humorous, (upper arm bone) to come out of its rather shallow home. I have only a few ligaments attached on that part of my arm. OI brings wear and tear. A pop and a mournful curse word and two weeks later I am feeling just about ready to start a new goal.

Breaks, sprains, pulls, they all come to people with OI at the silliest and most inconvenient times. Just when we start to feel all of the world is normal some slight unexplainable injury happens and we feel betrayed by our bodies.

Would I trade this in for anything? Would I like to be taller than three feet even? Would life have been easier without a visible disadvantage?

I can say yes to all of those questions, I have spent my lifetime working hard to achieve what an average person has. I’ve actually done most of it.

I’ve gone to college, have a husband, family, mortgage, dental bills, just like most but I do feel I could have done much much more with a more reliable body.

As disabilities go, though, I am okay with the inconvenience of OI, for me, that’s life. Life is what you do with your time, how you see the world, how you interact and react. Life is and why would I look that gift horse in the mouth?

For more information on Osteogenesis Imperfecta or Canine Companions for Independence click those links. 

Thanks for listening to me as I go a little stir crazy.  Here’s me hoping to get back to that gym.  Feel free to comment, see you next post.