The Aftermath

Well, I did it. I started my medicine again last night. And I'm OK.

After the training, the nurse told me to take all the time I needed before actually giving myself the shock. I surprised everyone by taking about 30 seconds to do it. I knew that if I just went ahead and did it, it would be better. The longer I stewed about it, the worse it would be.

I did suffer some side effects, but they weren't nearly as bad as they were the first time I took the shot. I'm wondering if that was because I wasn't in the midst of an attack this time. The first time I started the medicine, I was in the middle of an attack, and it was a painful attack. I was also dealing with the stress of being recently diagnosed when I did this the first time.

I was actually relieved to have some side effects, since my doctor told me that's a sign the medicine is actually working. But at the same time, the effects weren't that overwhelming. I didn't get a very good sleep last night, but I had a great nap this morning. And I don't feel drained at the start of my week, so I have a feeling this will work out fine.

Shot Happens

Well, this is it - shot day. The first in a long series of shot days.

I keep thinking back to my last blog entry - specifically, the last word in that entry. I know reading that word will probably spark some strong reactions, particularly from people who know me. There will be some shock and some disappointment. I thought about whether or not I should edit that entry and take the word out. I decided against it.

Yup, Amy swears. And Amy uses some really, really bad words when Amy swears. But that word was an honest response. It wasn't a pretty response, but that word came into my mind and out of my mouth that night. I'm human. Sometimes I don't react well to situations. That night, I didn't.

Some people might be disappointed in how I responded to it. Fine. But I'm not going to pretend that everything is sunshine and roses just because it makes others more comfortable. The truth is that this stupid illness isn't always pretty, and how I handle it isn't always pretty. Save the sainthood for someone else.

My husband gets it. That’s one reason why we’re still going strong after 9+ years. Even though I picked a fight with him that night – his birthday – he understood my feelings of powerlessness, of rage, and he forgave me. He knows that life with a chronic illness isn’t always nice and it isn’t always fair. But he takes those words “in sickness and in health” quite seriously. He also knows who I am and loves me anyway. That’s the way he is.

The worst feeling in the world for me is feeling powerless. I hate bucking up against “there’s nothing I can do”. It spawns anger, rage, frustration, fear…a whole whirlwind of emotions. On the other side of things, the fact that I’m not powerless is what’s getting me through the whole shot thing. Sure, giving myself an injection isn’t the most appealing of options. But it is an option. I’ve made a conscious choice to do something that will be, in the long run, the best thing for myself and my family. That doesn’t take away the pain or the side effects or the frustration that I won’t have the energy to do everything I want to do. But it gives me power. I’m not sitting here like a sitting duck, waiting for the next attack to pop into my life. I’m fighting back.

Speaking of fighting, that’s what I started to do Friday morning (well, other than the fight that Tim and I had Thursday night). The phone line for the support hotline opened up at 8:30 am, so I was on the phone with them at 8:31, explaining my situation. In less than half an hour I got a callback saying that there was another nurse available to honor the appointment. And when I talked to that nurse later in the day, we clicked. I immediately felt at ease with her, and for a brief period of time, I was actually looking forward to tonight. *snort* That wasn’t what I was expecting. So in the end, it’s all working out.

Oh, and don’t feel bad about my husband’s birthday. We went out to dinner last night and had a phenomenal meal. It certainly made up for the night before.

I’m still anxious about tonight. I’m certainly not looking forward to the shot, or the aftermath. And the best word to describe my reaction to the upcoming side effects is terror. Like I said, I’m not a candidate for sainthood here. But I’ll get through it.

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.