An Update

I've been on the meds for a few months, and so far, so OK. Things haven't been great, they haven't been bad. My side effects haven't been horrendous, but there have been times that they've been able to shut me down for awhile. I still have to get used to listening to myself and take the rest when I need it, where I need it. When I pay attention to my meds and take the well-timed nap, all is well.

My health problems aren't related to my MS as much as being the mother of two small toddlers. My back is killing me these days! Having a 2 year old and a 10 month old wreaks havoc on the healthiest of backs, and my back wasn't healthy to begin with.

Now it's time for me to recommit to my health. After months of bad food, insane work hours, it's time to take care of myself so that I can take care of others. After all, I can't wait around for everyone else to take care of me, and I'm proud of the fact that they don't have to take care of me...too often.

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.

The Appointment

Tomorrow I sit down with the neurologist to discuss treatment options. A couple of days ago, he called me to get me to start thinking about Avonex vs. Tysabri. I'm taking vacation this week (not illness-related, I just needed a break and some family time), and this afternoon was my chance to sit down with the computer and do some reading and soul-searching. Let's play Damned If I Do, Damned If I Don't.

On the one hand, there's Avonex. This is my known. I know that there will be hell over the next couple of months as my body adjusts. There will be the weekly disgust as I jam a way-too-big needle into my own body. I never got used to that. I won't ever get used to that. I picture myself in chills on the couch as my 2-year-old tugs on my finger, crying because I can't get off the couch to play with him.

I hate that picture.

The other hand is Tysabri. The unknown, the next great hope. Well, that is, if it doesn't kill you. All I have to do is exchange one morning a month to fill out boatloads of paperwork, hook up to an IV drip, and hope that I don't get a potentially fatal virus. Still, the benefits of the drug are huge - there's so much potential for this to provide a radical change for the better for so many people.

Just not me. Yet.

After wavering back and forth as I read through all of the National MS Society stuff about the two options and the Biogen sites, I just kept going back to Avonex as the right choice for me at this point in my life. At 39, I'm still young, so I need to make a decision for the long term. There's long-term use information on Avonex, while obviously there isn't any for Tysabri. If I were declining rapidly, if I were having attack after attack after attack, if my ability to function was being radically affected, then Tysabri would definitely be worth the risk. But my situation isn't dire enough to take that risk at this point. It's been 4 years since my last attack. Yes, I've had some minor symptoms, but for the most part, my life hasn't been that adversely affected by the disorder. And a good portion of that time was without any medication, since I was either pregnant or breastfeeding for such a big chunk of that time.

My hubby wants to come with me tomorrow to the appointment. I think that's a good idea. I'm so glad that he wants to be so active in my illness. I think it helps him too to be able to do something, instead of just sitting and watching. He's a fixer.

No matter what happens, you gotta keep your sense of humor. Like this morning, when the woman with vertigo and vision problems had to fix up her pedicure.

Is it pretty? NO! Duh. But given how chipped up the old polish was, and since it's going to be 100 degrees tomorrow, which means that this is sandal weather, I did what I had to do. It looks better than it did. Sure, that's not saying much, but I'll take what I can get.

Back Under Attack

Wow, time does fly. It's been 2 1/2 years since I've written in this blog, and a lot has changed in those 2 1/2 years.

Let's start with what hasn't changed...I still have MS. And I've gravitated back here for the same reason I started this in the first place. I'm having an attack.

I had an appointment scheduled for last week to touch base with my neurologist. I hadn't had a checkup in a long, long time because of my pregnancies (yes, that's plural), and we were long overdue to discuss my treatment options and check in on the disease. Before the appointment, I started to realize that I was having some problems. Everything looked OK on blood tests, and my opthamologist even checked me out. But things went from bad to worse. My blurred vision (not MS-related, just the typically growing older thing) was now double vision. There was an article in the most recent Inside MS magazine about vision issues, and there was double vision, prominently displayed right after optic neuritis.

Then I realized how much the room kept swaying around me...or me around it. At first I thought it was ordinary dizziness of a mother of two small children who spends way too much time in front of the computer, but it was more than that. As I read one of my MS books, the term vertigo stuck out at me. Vertigo refers to the sensation of movement, and that certainly applied to me. One evening, my husband and I were watching TV in bed, and the TV started to move downward. And it just kept getting worse.

So at the neurologist's office, I was told what I already knew, that I was in the middle of an MS attack. So the IV steroids started again, bringing immediate relief to the vertigo. Unfortunately, now that I'm using the steroid pills to wean down, the vertigo is coming back. Hope this is just a short-term thing. I don't know how people cope with vertigo for any period of time! My mom struggled with it when she was having some ear issues, and whoa, I have new appreciation for what she was going through.

I had to get back in the MRI tube. That's huge for me, since I'm a claustrophobe. It was better this time. I had it done at the same place, but they had a new machine which wasn't as completely dreadfully obnoxious as the previous one. This one was just dreadfully obnoxious. The folks knew exactly how to handle me, and I'm so grateful for their compassion. When the tech told me she could get through the whole set in 17 minutes and 51 seconds, even with dye, I was delighted. (Well, as delighted as I could be, given the fact they were about to stick me in that tube...)

Tomorrow night is my office's annual night-out at the Durham Bulls. Hubby and I are planning to go, but now I'm worried about it since it's so hot outside and I'm in the middle of an attack. With 100 degree heat on the forecast for later this week, I'm pessimistic on how I'm going to feel this weekend, when we're christening our younger son. This is supposed to be a fun and happy week. Instead, I'm wondering whether I'm going to be able to hold it together for the sake of my family. I've already asked hubby to stay home from church two weeks in a row because the vertigo was bothering me too much. I don't have a choice this upcoming week.

At least I'll have some answers. I'm meeting with my neurologist on Wednesday to discuss the MRI and decide on next steps. Right now, I'm hoping he tells me that the disease hasn't progressed too badly, and that we can still focus on efforts on drugs like Avonex or Copaxone. I think I'm going to try Copaxone this time, instead of Avonex. It means a lot more shots (daily vs. weekly), but the flu-like side effects of Avonex dragged me down so much for so long. And with two young children, I want to avoid that if at all possible. I'm already frustrated with how this damned disease is limiting my ability to parent my children how I want to, and I get choked up when I think about the treatment making that even more difficult.