Tuesday, January 20, 2009

If I Am Not My Lupus Then When Do I Feel So Discouraged?

Tuesday, January 20th an historical day for America

I missed the inauguration because I was at the doctor. Seems appropriate for me somehow. I watched bits and pieces of this historic day and allowed myself to feel the impact today might have on our history as a country. That's not why I'm writing.

I'm discouraged and depressed, again. We went to the doctor for test results - all of which I knew were not good news. I thought I had prepared myself to hear the doctor put into words what I already knew; the tests confirmed that you have nearly no colo/rectal function. You do not have the muscles to push waste through your system. Okay, I have known this for many months and suspected that it was irreversible for at least six weeks. The doctor stated what we all ready know - I cannot have a bowel movement without using an enema. The new information was what I most fear; I use the enema until it no longer works then we look at removing your colon. My body sinks into itself. The very thought of a colonostomy and what it takes to get to that point is so discouraging. The good news is that it's still in the future. So for now, just keep doing what I'm doing.

What about my lungs? Well, medical expertise seems to believe that I am aspirating into my lungs, causing essentially pneumonia. So, another swallowing study to determine if indeed there is a leak in my stomaphegus. The thought of having a leak is more than I can take right now - it was a leak that began the beginning of the end of my esophagus.

Now how about my pancreas? Well, we all seem to agree that the opening is pinched by your paralyzed diagraphm. Do the test next week and go back to your specialist and she what she suggests. It will either be more tests and the answer will be determined from this test. By the way, the test has a very high outcome of pancreatistus; 1 in 4. I am not going to be the 1 this time.

My head hurts and I am tired. I want to have the strength to deal with these medical issues when they need my attention, and then get rid of them so I can have other things going that matter to me. I want to work on a seminar about Lupus and couples. I want to get a web presence to help others with their Lupus problems. I want to finish my quilt. I want to be free from the ever present load I carry with me much of the time. Right now, I just want to lie down and sleep. I'm tired and I'm down. It's always a decision between giving myself some time to absorb what the doctors tell me or just pushing myself into tasks to get my mind off what's not good news. I used to push myself to forget. Today I am much more likely to give myself time to absorb and react. When I do give myself this time, I usually come up out of the depression and move forward from an emotionally connected rather than forced place. And I am grateful that my kids are all grown and out of the house so I have the freedom to lie on the couch for an hour or three before I move on to the next task before me.

I know I am not my Lupus but some days it's much harder to feel that than others. Today is one of those days.

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