I'm watching the NCAA Tournament, and I'm watching a feature on Siena's Kenny Hansbrouck and his dad, who has MS. I was glad when they won their first round game, and I am going to be cheering like crazy for them in round 2.

Even though I'm doing a lot better than many people with MS, I still have to deal with the ugliness of this disease. Today's word is constipation. I warned you folks, this disease ain't pretty. It presents a cruel dilemma: on the one hand, drinking plenty of fluids can help you prevent dealing with constipation. But MS also likes to play with your bladder, too, which can make you hesistant to keep pouring liquids into this quirky body part. So which is better...wetting your pants or having cramps, noises, and smells?

So now the emergency kits has a new addition. I've got the spare pants for the bladder issues, and the laxatives for the bowel. Since it's a weekend, I read up on the MS Society site for ideas on which ones to try.

I know, I know - this is not a pleasant topic. But when you're talking about MS, not many topics are.

Having MS can make routine tests turn into a double-edged sword. I had a colonoscopy last week, and while one of the doctors was explaining the procedure to me, he mentioned that it could lead to a flare-up of my symptoms. I didn't think much about it at the time, but I did remember those words a few days later as I was dealing with some major fatigue. I had wondered why my right leg had been feeling bad, and I wondered why I was so tired even though I had a good night's sleep and a morning nap. When I remembered that doctor's words, I understood.

The colonoscopy is one of those tests you have to prep for, too. I was on a liquid diet the day before the test and had to chug a solution the night before and morning of so that I would practically live in the bathroom. But that part of the prep was a piece of cake. The worst part? No blood thinners for three days before the test, which meant no ibuprofen on one of my shot days. I had to deal with the side effects of the Rebif that night, which was not pleasant.

Had a good checkup with the neurologist this week. He wants to see me every 3 months to check on my progress, see if the Rebif is working for me, and to get my blood checked to make sure these meds aren't killing my liver. He called back the next night to tell me that this blood test came back just fine. They all have.

I still laugh when I think about my mother's reaction to an article she read in the paper about Avonex being bad for the liver (back when I was taking Avonex). I just rolled my eyes and said that wasn't news...that's why I was having checkups every three months, because ALL of the drugs can be bad for the liver and needed to be monitored.

Sure, the disease-modifying drugs can be bad for the liver...but MS can be so much worse for a lot more than the liver. It's a matter of perspective.

The weird thing about having MS? I feel a HUGE sense of relief when I'm not feeling well and know it's because of something other than MS. Like this summer when I broke my toe - I didn't break it because of MS balance issues, I just broke it because of normal clumsiness.

I felt like crap earlier today. I was tired, my brain was scattered, and I wasn't in the mood to get much of anything done. I started to worry for a little while...until I noticed how much chocolate I was snarfing down. Oh cool - it's PMS! I was actually psyched to realize I had PMS, and it was a lot easier to be nice to myself.

It's been awhile since the second opinion, and things have been fairly routine. Haven't had any major issues, but have had to deal with some of those annoyances that come along with MS. But I've learned to adapt. For example, I've learned that I better have a spare pair of pants and underwear at work, in case those unpleasant bladder problems led to an accident. It's only happened once at work, but at least I could just grab the spare clothes, change quickly in the bathroom, and get back to my day.

Winter brings a double-edged sword. The cold weather is much easier for my system to handle than the warm, but it is challenging to layer up to go outside and then walk into a heated room with all those layers still on my body. The worst thing is that winter brings colds and flu, and my body does not handle fevers well.

I am relieved, though. After wrestling with whether or not I was on the proper treatment, I've had two doctors agreeing that I should be staying the course. Given how I have felt over a period of time, I'm in agreement.

Tomorrow, I'm getting a second opinion. It was my neurologist's suggestion that I have someone else weigh in on my case. He's been treating me for 6 1/2 years, so we're getting someone else to check me out now too. So tomorrow I drive nearly three hours...after I pick up a copy of my MRI at the radiologist and my records at the neurologist. And on the normal side, I'm getting my cholesterol checked before I head out of town.

I've never been graceful, but these days, I have an excuse for walking like Frankenstein. On the plus side, I like being able to explain why I'm clumsy...instead of just saying that I'm clumsy.

I have another doctor's appointment at the beginning of May. Part of me dreads that the neurologist is going to bring up Tysabri again. Yes, it's beneficial for lots of folks, but it's also been fatal. I can't get beyond that. I can't convince myself I'm bad enough off to have to go that route.

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.

False Alarm

Folks with MS are going to sympathize with me on this one, while folks who don't have it won't really understand.

Yesterday, I woke up with a nasty headache, centered behind my right eye.

Folks without MS: Sounds like a sinus headache.

Folks with MS: Oh, no! Was it optic neuritis?

Since my major attack was a bout of optic neuritis, that came to mind first for me. Time to panic. So I take some Tylenol (the only thing we pregnant women are allowed to take for pain), and check to see if my vision is blurry. No. Not yet, at least. A few hours later, when the headache is still nasty, I take more Tylenol and check my vision out of that eye again. Still OK. Finally, I just can't take it anymore, and I leave work, head home, and take a nap. Ah, headache better. Time to stop being scared.

Amy's Big News

In my last entry (two months ago - yeah, I know) I hinted at some big news. Well, I'm now prepared to share it with the world. I am PREGNANT.

I didn't want to say anything out here on my blog until I had gotten past the first trimester. Plus, I think my family would have been a little disappointed in me if I had told the WWW community before telling them. But now, I can share my news that I'm due in late June.

What about pregnancy and MS?

When I was first diagnosed, I had so many women say things to me like, "Don't let this disease discourage you from getting pregnant" and "I felt better pregnant than not." What I've read in numerous books and articles backs these statements up. During pregnancy, women with MS are significantly less likely to experience symptoms or have a major attack. As a matter of fact, one of the reasons that there's been hormonal research has been because of this reduction in problems during pregnancy. Researchers think that something must be going on with hormones to trigger this, and are looking into why so that they can apply it on a broader basis.

I am at increased risk of attack for the first 6 weeks after delivery. Some experts speculate that's because of the sleep deprivation and stress, which most folks with MS know are recipes for disaster. This means that breastfeeding is a major decision for me. Do I try it and risk an attack, or do I feed my baby formula and go back on my Avonex right after delivery? Right now, I'm willing to take the risk. I have loads of family and friends around to help me, and Tim will be on summer break when the baby's born, so it's worth a try.

Speaking of Avonex, am I on it now?

Nope, my neurologist wanted me to be off of it for a few months before we tried to get pregnant. I have to admit, I was nervous about stopping the medicine. After all, I've been doing well while on it, but how long could we risk my being off of it? Luckily, I got pregnant right away, so we never had to worry about that question.

What about my pregnancy in particular?

I had an easy first trimester. My morning sickness was limited to a few instances of nausea - that's it. The biggest thing I noticed was the fatigue. Having MS actually prepared me to deal with that. I'm used to taking a break and conserving my energy when I'm not feeling well, so it wasn't difficult for me to do that during the first trimester. I can see how women who are used to going 100 miles an hour and ignoring their body's signals to slow down could have major problems in the first trimester of pregnancy. But I'm used to taking a nap or going to bed early when I'm tired. I didn't fight the fatigue, I just dealt with it.

I know, I know, I've been awfully quiet. I have my reasons, none of which are bad.

On the MS front, there's really been nothing to report. Still not having any major exacerbations. Still having to manage fatigue. Other than that, the health news has been quiet but good.

I'm trying to exercise more, and I know that's been a common theme in my posts. My parents just downsized, and I was the lucky person who got their treadmill, among other things that wouldn't fit in their new home. We've finally parked the thing upstairs, where I can walk and watch TV at the same time. I've did that 3 times last week, but none so far this week. Consistency, consistency.

Things will change around here, and I'll get to the point where I'm updating more than once a month. Right now, there's just not a whole lot of news. Just be patient with me.

I'm back!

Whoa, I knew it had been awhile since I had posted, but I didn't realize how long! How to catch up in a few thousand words or less...

Football

I've attended two other football games since that disasterous one, and both have been quite pleasant experiences. The weather was much nicer (translation: cooler), and I took better care of myself. During the UNC-UVA game, our seats were in the sun, so I followed Tim's lead in heading to the shaded concession areas during halftime. It was a good break. Of course, UVA soundly defeating UNC that day also made it easier to endure.

My Health

Up and down. I got a bad bad cold, which caused me to miss a couple of days at work. Once I got over the cold symptoms, I was still feeling run down. I'm finally feeling back to normal.

Learned a lesson the hard way this weekend - it only takes one day of not taking care of myself to really throw myself out of whack.

We went to the UNC-Florida State game on Saturday with friends. I was running around all day, running errands, and I didn't bother to eat anything because I was too busy. Then we left for Chapel Hill around 5. It was still very hot when we got there. I pigged out on the tailgate we had - a tailgate that was completely void of healthy foods. I realized I was in trouble when I walked over to the Football Center to use the restroom. I didn't say anything to anyone, but it was obvious to everyone as we were walking into the stadium that I was not well. Between the heat, the food smells, and the smoke, I was very quickly becoming quite ill.

We headed to our seats, but I realized I was either going to faint or throw up, so I headed to the ladies' room. Luckily, the line was short, because I was very scared that something was going to happen while I was in line. I made it into a stall before getting sick. And even though I kept drinking water and stayed seated once I got back to the seats, I was so ill that we all talked about leaving at the end of the first quarter.

When our friends took a restroom break, I cried to Tim. "Stupid multiple sclerosis. I hate this disease."

The group did get to laugh about midway through the quarter, when the scoreboard flashed scores from other games. Seeing that Wake Forest had upset Boston College, and that Virginia was shutting out Duke, suddenly perked me up. They were teasing me at how quickly I came around when I saw those scores. Let's hear it for distraction.

We left at halftime, and I headed straight into a cold bath. I missed church the next morning so I could sleep in, and I made sure that I didn't continue the cycle of unhealthy eating. The plan for the rest of the weekend suddenly included regular breaks to sit and relax.

I'm doing better now, but yet another lesson learned the hard way.