Disability Reality

My source of energy.

In the beginning of this disease process I had a hard time imagining how ECD could cause me to become disabled. In fact I found the notion that I would ever go on disability ludicrous, even though many people with ECD are on disability. In all honesty I judge them and others on disabilty. They look okay...why aren't they working?

However, after Saturday when I could barely move and Sunday where I had to concentrate and conserve energy just to finish the worship service I understand that there may come a day where I am not able to continue to working. The constant weight loss added to the stress caused by the ECD have left me with no reserves. This morning it took concerted effort just to make myself breakfast, then when I got to work I sat in my car for 15 minutes wondering how I was going to be able to do it.

It is scary to think that there could be a day in the near future when I am forced to give up working. Someone said to me recently, "just put in for disability, you've paid in its yours to use" that may be true but it is never that simple. First, I have been raised to work for what I take (and disability sure feels like a handout). Second, to go on disability means not being able to teach (which would make me sad) and to not be a Pastor anymore (which would be devastating).  If things do not improve though I cannot see how I will be able to keep working.

Hopefully the doctors visits I have coming up with my gastroenterologist, nutritionist and the NIH (National Institutes of Health) will help.

Update: Spoke with my Gastroenterologist tonight on the phone (yes doctors do call you at home but you never want to be sick enough for this to happen) about my weakness and weight loss. He said I have to increase my calories and take the pain that comes with it. Sighh..I'm not sure how long I can handle the pain, honestly I'm barely hanging on here.