Thursday, September 30, 2010

Not Worth It

It turns out doctors just, like, say anything on line. They say one thing under their bio on the hospital website. Another thing for their professional association.

So I have no idea who does or doesn't do adrenals.

My own endo, doesn't list them at all on the hospital website.

On the professional website, they do.

????

All I know for sure is the meager patient network I've found has no docs for my area.

Today's thought is to go to an endo where my pulmo is. (Avoiding the ass endo I saw there previously.)

I WANT MY ADRENAL GLANDS BACK.

And I really don't want to ever have Secondary Adrenal Suppression (SAI) again.

EVER.

Which means I need an endo who can consult with the pulmo. So we can at least say we tried.

Being in the same health system seems to facilitate that.

So that is my thought of the day.

It can't hurt.

If it doesn't work out. I will try to find a pulmo in the network with the current endo and go back to the current endo to push for some kind of coordinated care. (Only thing is, their pulmo dept kind of sucks and it would be difficult to establish myself all over again since I have the 'you don't have asthma' curse.)

I want to treat my asthma in a way that does not enable the adrenal suppression. This is key, in my humble opinion. The priority has to be getting my adrenals back.

For example, I did not start Pulmicort with the latest flare. It just becomes another steroid to wean off and it complicates things when I have 2 separate steroids to wean off of. This is part of the reason why I treated the last flare with more prednisone, I was not about to touch Pulmicort as I feel tryng to wean from it contributed to the last adrenal crash I had.

(Know how I got off it? I just stopped cold turkey while taking prednisone. I figured I could bump up the prednisone if necessary to compensate and just wean from there. It really is truly difficult to be weaning from more than one steroid medication at a time, I felt this gave me a good shot at actually getting down to one steroid. I seem to have been right.)

This also goes back to one of my to-dos from March, build a better neublizer treatment. The nebulizer could be really effective for me and help me not feed the SAI when treating asthma. However, the pulmo has been blowing me off on this since April.

Big sigh.

I want more than just albuterol solution in the home aresenal.

Honestly, what is so f*cking hard about this? I really don't see why I can't get any forward motion or support here.

I don't know about anyone else, but I can't live like this. Thankfully I have my family, but if I was still infertile and going through SAI? Life would not be worth living. At all.

This is my own personal 'worst pain'.

1 comment:

  1. You said you have the "you don't have asthma curse", and say you have asthma... what exactly do you mean by this? I'm slightly confused. I have a feeling I understand what you mean, but I'm not quite fully sure.

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/