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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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Sally

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Comments

3 responses to “Pity Pots and Validation”

  1. Sue Avatar
    Sue

    I have OI too! and there comes a time when you need a day or too on the pity pot! and as you said then get off it and get on with life, otherwise we won’t have a life. We always have some bone cracked or i’m like you putting on a bra and my shoulders dislocate. It has happened so many time that I as good as any ER doc to pop it back in and put it in a sling for a week or 2. That means back in the wheelchair and off my crutches and depending on my sister to drive me where I need to go since I can’t drive my handcontroled car with one hand. SO have your fun on the the pity wagon just don’t stay on it too long! We crack and we Pop thats our way of life!

    PS
    are you on OIParent if you are I love what you wrote about PAM.

  2. Sara Avatar
    Sara

    Lovely post Sally,

    That puts it in perspective.

    Sara

  3. Skip Avatar
    Skip

    Hi Sally
    If anyone has a right to complain I think you do. We can hope with their work on DNA, they will find some way to help you and others. We in writers chat room love you for you.