Tuesday, April 21, 2009



It has been 9 very long, very painful, absolutely AGONIZING days.

On Friday, when I went to see Dr. Hank for an emergency work-in appointment, my pain level was a 9 out of 10.

Keep in mind that I have had many painful surgeries, two births (one of each kind), a MRSA infection and subsequent excision (that I was awake for), and I once dropped a fire extinguisher on my foot in the garage. All very painful experiences.

So for this recent 'problem' to warrant a NINE, believe me, it sucks.

According to Dr. Hank, I have "failed" Cimzia. I yelled at him for saying that. Swear. Why couldn't he have said, "Cimzia failed YOU"? Right.


The newest meds he has prescribed have improved me to about a 7. But I have moments of 9. But since there has been improvement, I am trying desperately to remain (or become) positive.

On Thursday, I am having a CT scan.

Dr. Hank thinks my duodenal Crohn's has spread since January, and has not been helped by the Cimzia.

The good news (I try so hard to focus on scraps of good news) is that my intestines have improved. So I think the Cimzia was working there at least.

Duodenal Crohn's is the rarest type of Crohn's Disease. Imagine that. I told Billy that I always wanted to be in the .5% of something. I just didn't have this kind of notoriety in mind.

Not only do I feel as if my stomach, esophagus, and mouth are AFIRE, I have 10-20 diarrheic bowel movements a day. My mouth has no less than 11 painful, bloody sores. My voice sounds like Kim Carnes in "Bette Davis Eyes". The acid continues to make its way into and out of mouth.

I have not left my house since Friday, and that was only because I had to see Dr. Hank.

We are in unchartered territory here. Dr. Hank is already talking about 'what we do next'.

I just want the agony to cease.

I don't give a damn what we do next.

Really, I don't.

Even though it looks like Remicade is back in my future.

Don't care.

Don't care.

Don't care.

The pain HAS to go away.

I have become nothing but a whiny, worthless blob of a person.

Thank you JESUS, that my dear, sweet, husband has been such a blessing through this past week. Sometimes he gets sick and tired of me being sick and tired. But this week, he has been nothing but supportive. He has stayed close to home, and been there for whatever I have needed. I haven't even had to ask him. He knows I hate this. He knows I am not milking this. He knows I would rather be fishing.

Onward we trudge.


1 comment:

  1. I am sending you all the positive karmic vibes I can. Be well. You are loved.