Tuesday, August 17, 2010


My GI called me back this afternoon after I called yesterday asking for my results from the endoscopy and the Indium scan. Here's a breakdown of our convo:

After exchanging typical pleasantries:

GI: (excited voice) I have really good news. The scan didn't show anything, no large collections of white blood cells, so no abscesses or obvious sign of infection.
Me: (monotone) Ok.
GI: (still excited) and your endoscopy showed just mild inflammation.
Me: (silence, waiting for some sort of next step or solution, also not nearly as excited as she is.)
GI: (more subdued tone) I hate to ask this, but you have been through a lot in the last 3.5 years, and it would be rightfully so, but do you think this is anxiety?
Me: (not so monotone anymore) No, I do not think it's anxiety. I own my anxiety issues and take my medication for it. I do not think this is me manifesting stress.
GI: Ok, well how are you feeling?
Me: I'm feeling exactly the same. And actually the pain over my right hip has increased over the last few days.
GI: Yes I am surprised they didn't see anything there. Are you eating, have you lost more weight?
Me: (matter of fact) I'm trying to eat, I don't think I'm losing more weight but I don't know if I've gained or lost, I don't own a scale.
GI: Ok, well we can try some medication for the slight inflammation in your GI tract. Call me in a week or so to let me know how it's going.
Me: Ok. Thank you.

So, lets see they didn't see anything so it must be nothing, unless maybe it's just me manifesting stress and that would be totally acceptable seeing as I've been through so much. Um, no thank you, I don't think so. Not an acceptable answer.

I actually think this is bad news and as horrible as this is, I just wish they would find something, even if it was terrible so we could at least have some sort of path to follow.

I'm tired, I'm lost and I'm pissed -- wait don't I say that every week these days? One of my greatest fears is that I'm making things up in my head or not noticing things going well and although I know I'm NOT making any of this up and that I have been RIGHT every time when I've known somethings amiss, having a doctor even put this notion in my head is WRONG.

So now what? I'll go to the appointment tomorrow with the other surgeon armed with all of my records, all of my symptoms even the ones I usually just shove off. I already have auto immune issues and the more I think of it, the more I can't understand why that wouldn't automatically make the doctors research the possibility that maybe I'm having another auto immune issue. Maybe my body is doing what it always does and finding a new way to attack itself.

I'm also waiting for a lab slip to check my adrenal sufficiency (Addison's disease.) I'm not going to give up, I know something is wrong and it may take drastic measures and who knows how much time but what else can I do.

I need my own Dr. H.ouse. Please, if any of you have any suggestions, referrals to doctors, anything please send them my way. I need help and it's up to me to find it.

My mom just sent me an article online that had this as a comment underneath it:

"I have an undiagnosed chronic health issue. I have been blamed, ignored, misdiagnosed, mistreated, passed around….

Without a diagnosis, there is no discussion on quality of life, reducing symptoms, or compassion. I suffer alone."

This about sums it up.


ThisMamaRAZZI said...

Hey Al. Sending you love your way. Hang in there and stay strong. Hoping this new consult will give you a new direcion.

sarina1213 said...

Well, well, well...clearly these people are retarded. You obviously know yourself and your body and I think it's pretty amazing that you continue to trust yourself and your instinct. Your strength, courage and determination are admirable and if I were them, I would do what's good for them and just get it done. period.