So Much For Support

I am so pissed off at the so-called "support" networks in my life.

I've been in limbo for a couple of weeks on getting started with my medicine. When my nurse finally got in contact with me, my only option was the next night because she was going on vacation for a week. So we decide to schedule it for after she returns to town. She tells me that she'll let the support network know in case another nurse is available to schedule time with me.

Surprise, surprise, no call.

The nurse called me as she was getting ready to return to town after her vacation, and we scheduled my appointment for this upcoming Saturday. I made arrangements with my sister to come to the house for training with us, and for my mother to come by in case we needed help getting the boys ready for bed at the time of the appointment. My husband and I watched the instructional video, and we made sure we had everything in place for Saturday night.

Then the phone rang tonight. My nurse's work schedule has been changed, so she would not be coming on Saturday to train me. She could come tomorrow before 1:30. Yeah, right. I have a job, I can't just drop everything because her work schedule changed. Or she could do it Monday night. Doesn't matter that I get the on-call pager for work that day...or that I have to go to work the next day. So what that the medicine is going to make me feel like total crap. So what that I've got a hectic work week already scheduled for next week that I can't just drop at a moment's notice. It was also quite convenient that this phone call was at the exact moment that the MSActiveSource line shut down for the night, so that I couldn't call my case manager tonight.

I'm so frustrated with the "support" I've been getting. Even though I've explained repeatedly that I should be getting called at work, they always call me at home first. Surprise, surprise...I'm not there. They made such a big deal about having me sign a privacy form, identifying those people with whom they can discuss my medical condition, but they'll call my home and talk with anyone who picks up the phone.

And then there's my pharmacy. Even though my husband and I have repeatedly explained that they should call me at work, they keep calling home first. Today, a woman left me a message asking me to call back. Too bad that the phone number they gave me spouted off a voice mail message and then disconnected me. Twice.

I'm tired of the mind fuck.