Checking in again!

[Guest guest]

Hi everyone!

I just thought I'd check in again and give another update.

Found out some interesting things recently and I'm trying to muddle through

the chaos!

First, I'd like to note that my prednisone tapering, while an absolute

NIGHTMARE on my body, is FINALLY over. I took my last dose on February 28th

and I am still prednisone FREE up to this point. As of today, when I get

my Xolair, I will have been on the wonderful medication for a full year!!!

My tapering process was horrid, and I'm still having some side effects.

Apart from a terribly low immune system, I'm experiencing some migraine

headaches, (which I've always had, but seem to be increasing although I'm on

a preventative " topamax " .) and for some reason, I can't tell the difference

between being hungry, thirsty or just being nauseous. Also, it's wreaked

havoc with my clinical depression. I was beginning to even out a mild case

of depression with Zoloft until I began my taper, and then things went

haywire. Now, my insurance company no longer wants to pay for Zoloft, so I

m trying out Lexapro, and I'm in the midst of a major depression.

I'm seeing a therapist, and trying to stay positive. Some things have

happened in my personal life very recently that were beyond stressful, and a

year ago would have landed me in the hospital. So, my therapist has asked

me to focus on all I've been through and am going through that normally

would have hospitalized me. He told me that these are major accomplishments

and told me to use them as reminders during my depression as to how far I've

come!

Also, I'd like to add that I've been seeing a gastroenterologist because I'm

still having minor attacks that couldn't seem to be explained. Turns out, I

am aspirating acid from my stomach and don't tolerate it at all well. It

seems to be the trigger that caused my past episodes of nocturnal

respiratory arrest. Right now I have my doctors all debating about whether

or not I should have surgery to correct the problem. It seems that my

esophogeal sphincter is totally useless. My reflux comes all the way up to

my throat, and although we've been able to keep the acid level minimal with

meds like prevacid, it just isn't enough. I'm still aspirating small

amounts of acid, and the tiniest amount triggers me. One doc says I need it

one doc says that it's too great a risk as the procedure can have

complications such as needing the band they use to duplicate the sphincter

muscle to be dilated frequently because it can be too tight. I don't know

what to think about all that, all I can do is talk to my doctors, and trust

that they'll all come to the right decision. I'm so much better now that I

ll take a few minor attacks a day that my inhaler will cure as opposed to

how I was a year ago.

I know I don't post often, but I do read all of the posts that come through,

and speak to my doctor and nurses when I get my Xolair injections about this

group and they all think this is a wonderful thing. They've asked me to

thank the founders for them, as it's very helpful for Xolair patients to

have a sounding board and be able to talk amongst each other. And, he's

asked me to thank our resident nurses on the group for all of their

expertise and for keeping things from going astray.

Also, a great big thanks from me, who wouldn't have come this far without

the encouragement from all of you. A year ago I'd have never believed I'd

be prednisone free, and so close to the one year mark of my last hospital

stay!

~ in Massachusetts (Prednisone free for 1 month, 11 days and counting)