tag:blogger.com,1999:blog-45604863996524727922024-03-13T13:09:41.457-04:00Too Tired to BlogI'm a mom of four, a wife and a writer. Oh, I also happen to have MS. This blog is all about what happens when those two worlds collide.Unknownnoreply@blogger.comBlogger105125tag:blogger.com,1999:blog-4560486399652472792.post-25568285516982454692014-08-06T13:42:00.001-04:002014-08-06T13:57:26.263-04:00In Search of HealingThe other day I was watching Kris Carr's documentary <a href="https://www.youtube.com/watch?v=S8ylpgN_5mg" target="_blank">Crazy, Sexy, Cancer</a>. In it, there is one line in particular that speaks to me. She says that when it comes to illness, "You have a full-time job. You're always at the office of healing." She's exactly right.<br />
<br />
I've mentioned before that there is not one minute of one day that I do not think about being sick. I can't help it. There are injections to be made, medicines to be taken. Blood work ups, tests, medicine adjustments, new symptoms, doctor appointments, insurance issues. I talk about it. I read about it. I research. I ask questions. I take note of every little change in how I'm feeling. It's exhausting, and it takes a lot of time and energy. Time and energy that, quite frankly, I don't have.<br />
<br />
If you look at my computer you will find an obscene amount of articles on MS, links to diets meant to cure MS, videos on MS, articles and quotes to blow sunshine up my ass and make me feel that if I truly wanted and worked hard enough, I'd beat this. Best I can tell, the best thing for me to do is run around a lot and then go in the backyard and eat grass. And yet, despite all that, I'm still sick. What's up with that?<br />
<br />
I often wonder if there's something I'm doing or not doing that could change my situation. And then I question whether or not I really have any control over this anyway. So I'll keep searching. Maybe one day I'll find an answer.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-31573651319072967142014-06-29T22:12:00.001-04:002017-09-21T15:45:57.242-04:00Damn, It's HotAh, summer. A time to bask in the sun, sit by the side of the pool, get outside to play and run around. Well, in theory that sounds about right. But unfortunately, for those of us with MS, the reaction is more like, "Ugh, Summer." You see, MS and heat are not simpatico, even though Vitamin D has proven to be beneficial. See the quandary? Heat tends to temporarily worsen symptoms--whatever they may be. For me, that means bone-crushing fatigue and the entire right side of my face going numb. It's kind of a built in alarm symptom: Warning heat alert! So, no, summer is not one of my favorite times.<br />
<div>
<br /></div>
<div style="text-align: left;">
</div>
<div>
Because I can not hide in my house and grow even paler than I already am, I have tried to find ways to counter my heat intolerance. But, unfortunately, the options for keeping cool are not cheap, not stylish, and not comfortable.</div>
<div>
<br /></div>
<div>
What are my options? Well, the easiest is probably the cooling bandana. Yes, I said bandana. As in the thing cowboys wear around their necks. It's bad enough I have this damn disease. I don't want to look like I'm wearing an ascot borrowed from Freddy Jones to combat it. No thanks, I think I'll keep looking.</div>
<div>
<br /></div>
<div style="text-align: right;">
</div>
<div>
What about cooling towels? I recently bought one and it works well. The only problem is, I still can't quite figure out how to wear it without looking like Rocky Balboa. You know, when he had the towel wrapped around his neck. Now, go ahead and imagine my children's horror when I walk into the pool looking like this: </div>
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIL-PcQdtFg90z-Fn3aDfYzLXXzbPIvgGFhVMwMs9J-p_56Uusoo9Q-0JtCB0v0NAks49izmCUeR-7t8TTd2YAe7p3lMil862Lj6KPtYux-EE5pf6vC40anabzXfz9_QpQhAzllAEvO7BV/s1600/Roman-Reigns.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="130" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIL-PcQdtFg90z-Fn3aDfYzLXXzbPIvgGFhVMwMs9J-p_56Uusoo9Q-0JtCB0v0NAks49izmCUeR-7t8TTd2YAe7p3lMil862Lj6KPtYux-EE5pf6vC40anabzXfz9_QpQhAzllAEvO7BV/s1600/Roman-Reigns.png" width="200" /></a>The priciest of the cooling options that I have found is the cooling vest. It is exactly what the name implies. It is a vest that you wear under your clothes to keep your body temperature down. You fill the compartments with ice packs. You know, kind of an MS bulletproof vest. Of course, I could choose to wear it on the outside of my shirt, leaving me to look somewhat like this guy. Pretty badass, huh? Except I'm a girl, and I would definitely wear a shirt underneath and wash my hair. Well, you get the picture.</div>
<div>
<br /></div>
<div>
Of course, there are easy things I can do to keep cool. But even those are not always all that easy. For instance, I drink plenty of water to make sure I stay hydrated. But that's not always easy, either, considering that my kids continually ask for a drink of said water. Or, a lot of times I'll bring a misting fan with me. For the most part, these fans do a good job--except for the fact that mine are usually out of water or broken. Apparently misting fans are simply a code name to my kids for water guns, and they also have some unwritten requirement that one must grab the fan while it's spinning to make sure that it can stop and then spin again. News flash, kids. They won't keep spinning if you keep sticking your fingers in them Sigh.</div>
<div>
<br /></div>
<div>
So, while I guess there are a lot of options to help me beat the heat, I still haven't found the one that's right for me. Until I do, you can find me at home. I'll be the translucent creature in the corner.</div>
<div>
</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-47368094324881844942014-03-01T10:08:00.002-05:002014-03-01T10:08:17.572-05:00Brave<div style="text-align: left;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirHSmAjO5uz0jW4HVqVqqGEgrgZNuqH71qTh0Kiw9tRfJGALqImoIOayCDv-zIQA1huNHN4hUw-u5di3264Z7zTwlCsUy7lnOSUJKGmwd6jtiNFd1MAARA7VjL4QgjPCThZF6xo71v-3Z5/s1600/IMAG2094.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirHSmAjO5uz0jW4HVqVqqGEgrgZNuqH71qTh0Kiw9tRfJGALqImoIOayCDv-zIQA1huNHN4hUw-u5di3264Z7zTwlCsUy7lnOSUJKGmwd6jtiNFd1MAARA7VjL4QgjPCThZF6xo71v-3Z5/s1600/IMAG2094.jpg" height="320" width="244" /></a></div>
<blockquote class="tr_bq" style="text-align: justify;">
Sometimes you have to trickle down through a whole lot of messy to make it to brave. And sometimes that's a very slow and scary process--not knowing where the messy's going or how it's going to play out. Sometimes it seems like it would be a whole lot easier if it was the other way around; starting off brave enough to deal with the things that follow. But life isn't like that. So, I guess all you can do is wait for the brave.</blockquote>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-57973819316782814212014-02-12T16:41:00.004-05:002014-02-12T16:41:42.660-05:00Going it AloneThe other day I registered for the Run MS race. Seeing as I've done lots of races in the last two years--wow, that sounds really weird--it should have seemed like just one more. But as I filled in the registration it didn't.<br />
<br />
I got to the section that asked me to indicate whether I was forming a team, was part of a team, or running as an individual. I thought about it for a second, and then marked the box for individual. It was the first time I'd checked that box since I started this whole running adventure. It wasn't because I didn't want to run with any of my partners-in-crime. They are the best part of my running. No, it was about something bigger than that.<br />
<br />
One of the things about MS that has always bothered me is the fact that it often makes me rely on other people. I don't like that. I'm independent--always have been. I don't want to admit that I can't do something. I don't want to ask for help. Some would say I'm a bullhead.<br />
<br />
So this race in particular is about proving something to myself. A kind of big up yours to this disease. It was me and MS. Head to head. Mano a mano. So you are all welcome to come cheer me on, but this time I'll be out there alone. This time it's personal.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-82452644278876113272014-01-31T10:36:00.001-05:002014-01-31T10:38:12.534-05:00A Letter to My Newly Diagnosed SelfIt's been almost 13 years since my world turned upside down with one phone call. Looking back, there are so many things I wish I would have known then. So this many years later, I wish I could go back and share what I've learned on this journey. If I could, this is what I would say:<br />
<br />
<blockquote class="tr_bq">
Dear Me,<br />
<br />
I'm so sorry. I know you're world has been rocked and, if I'm being honest, I have to say it will never again be the same. I don't mean that to scare you, but the reality is that you are now different. You will forever see yourself through the prism of your MS. It will be your constant companion. You will wonder at some point every day when and if this unpredictable disease will rear it's ugly head. You will stress over being confined to a wheelchair. And yes, you will at one point or another think about whether or not you will die from this. STOP. Those things are not a done deal, and stressing over what may be will use up a lot of energy that you don't have to spare.<br />
<br />
Speaking of energy, get ready for fatigue like you've never imagined before. And I'm not talking normal fatigue. It's "I can't get up and walk to the other side of the room" fatigue. It's "I just slept 12 hours and feel like I didn't sleep at all" fatigue. It's "who put 20 pounds ankle weights on me when I wasn't looking" fatigue. People will say they understand. They don't, they won't, they can't.
Just nod your head and smile. There's no way to put what you'll feel into words. You will mourn the energy you once had. Again, I'm sorry. I wish I knew what to say, but I still don't have any good answers.<br />
<br />
You will become very familiar with the MRI machine. Try asking them to put something over your eyes before you go in. It helps with the claustrophobia. Trust me on this one. Oh, and don't bother with the headphones. You won't be able to hear anything other than the banging and buzzing anyway.<br />
<br />
Most importantly, ask questions. Ask for explanations. Research. Seek out help. It's all out there ready for the taking. Don't be afraid to use it.<br />
<br />
Wow, there are so many other things I could tell you, but I don't want overwhelm you. You'll figure it all out in your own time.<br />
<br />
NOW, having said all that, listen very closely because this is the important part. You've got this. You will discover that you are way stronger than you ever imagined. You will learn to embrace the freaky MRI pictures of your brains. You will get to a point where sticking a needle in your stomach, thighs, hips or arms no longer makes you flinch. You will learn to fall and not get hurt. You will learn to laugh about all of this. You will do things you never thought you could--even before your diagnosis. You will be awesome. Hang in there. It's going to be OK.</blockquote>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560486399652472792.post-900036677389870012014-01-29T15:29:00.004-05:002017-09-21T15:47:27.973-04:00Desperately Seeking StabilityHave you ever seen those stability things at the gym? You know, the ones that look like this: <br />
<br />
Well, the other day when I was working out I decided to give one a try. Working on balance is a constant goal of mine since I basically have, well, none. I pulled the balance thingy over in front of the mirror and confidently attempted to hop onto it. Well, I didn't really hop onto it because that would have been stupid and disastrous.<br />
<br />
But I stepped on with one foot...and then attempted the other. Fail. I tried again. Fail. Luckily for me, I had placed the disc-looking thingy not far from the mirror--though I'm not sure why I would be stupid enough to do that and watch myself fall all over the place. But I sure was glad it was there so I had something to brace myself against instead of face planting on the gym floor. I do offer my apologies, however, to whoever had to clean all of my finger, palm, and face marks off the mirror.<br />
<br />
After about the third failed attempt of climbing onto the balance ball or whatever you call it, I decided it must have been the equipment that was causing the problem. God knows it wasn't me. So I confidently retrieved the larger, more sturdy looking stability ball, trying to play it off like it was part of my workout regimen. It had a solid base, so logically it would be easier, right?<br />
<br />
Wrong. After I fell off the first time, I turned to see the guy working out next to me staring in my direction. I smiled, and returned to my workout. Step up, fall. Step up, fall. I puffed out my breath as if I had just completed an intense workout and returned the equipment to where it belongs. I came back and gathered up my belongings, patted my forehead with my towel and headed for the treadmill. You know, sometimes walking's much easier than standing. At least for me.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560486399652472792.post-66807571421076786532013-09-16T11:08:00.001-04:002013-09-16T11:08:19.579-04:00Hmmmm....So what does this video have to do with my blog? Well, come back tomorrow and you'll get the answer. <br />
<br />
<a href="http://www.youtube.com/watch?v=-AphKUK8twg" target="_blank">http://www.youtube.com/watch?v=-AphKUK8twg</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-14981147785736265092013-09-09T17:38:00.000-04:002013-09-09T17:54:37.025-04:00The Little Things<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRbHgYWF7J8I3EGQk0JEOnaCYPVw9eVGEgF75R5kFMUK_YRdgMHqNdHPr9OYBWrddTNmpxeUC1IS0ikBfmefqA1ZXwODlKyD8gO6koYNdVP-DltTtoq8PbuPmiErh5co-k6RViv5T1e29x/s1600/IMAG1262.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="175" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRbHgYWF7J8I3EGQk0JEOnaCYPVw9eVGEgF75R5kFMUK_YRdgMHqNdHPr9OYBWrddTNmpxeUC1IS0ikBfmefqA1ZXwODlKyD8gO6koYNdVP-DltTtoq8PbuPmiErh5co-k6RViv5T1e29x/s400/IMAG1262.jpg" width="400" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8qnxOrzshU1YzBPyadDAhqDw-ci2nddHfG9ew0VvLe33PLv23WoW1sKD8QRKk5tYgWY_1qNI2m5TubmCXLivvYsBOmxAH2wYM_vaNG3bA43rbTd2uofpbcx3pWOajCCdMOslki0ZDv8Io/s1600/rock+back.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="138" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8qnxOrzshU1YzBPyadDAhqDw-ci2nddHfG9ew0VvLe33PLv23WoW1sKD8QRKk5tYgWY_1qNI2m5TubmCXLivvYsBOmxAH2wYM_vaNG3bA43rbTd2uofpbcx3pWOajCCdMOslki0ZDv8Io/s200/rock+back.jpg" width="200" /></a>What is it about us that needs affirmation no matter how old we get? We question ourselves, our abilities, our looks, our talents. Well, it seems like every time that happens someone comes along and provides that extra needed shot of "You're kind of awesome."<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbNE4muk4HrFJYMhW-wsjIzyAEyHkXuwu9hqfHmoGCSQdCUfUEYk0dH8XRgpkVgP4fn0U1q3kZqo6LYodc3vDVmVJeNc9nQdJXuQkyWJJgMv19g9gvrMkVgKOAE7Dqa8DVxfM_fsa_cJld/s1600/turtle.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="146" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbNE4muk4HrFJYMhW-wsjIzyAEyHkXuwu9hqfHmoGCSQdCUfUEYk0dH8XRgpkVgP4fn0U1q3kZqo6LYodc3vDVmVJeNc9nQdJXuQkyWJJgMv19g9gvrMkVgKOAE7Dqa8DVxfM_fsa_cJld/s200/turtle.jpg" width="200" /></a>This time it was my sister-in-law Jeannie. The other night she gave me this card with the quote up above and my very own rock turtle, which I will be carrying with me when I run now. Thanks, Jeannie.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-37547184144077089012013-09-03T09:46:00.001-04:002017-09-21T15:48:13.606-04:00Back in the SaddleI know it's been a long time since my last post, but life got kind of messy these past couple of months. So I'm trying to pick myself up and begin again. I hope you will welcome me back and rejoin my journey.<br />
<br />
So let's see, what's new...seizures, hearing loss...you know, all the fun stuff that comes with this disease. But on to the important stuff. I've got a new adventure, and it's coming up really quick. In four weeks I will be heading back to Disney World (it is, after all, my favorite place on earth) to take part in the <a href="http://www.rundisney.com/tower-of-terror-10-miler/" target="_blank">Tower of Terror 10-miler</a>.<br />
<br />
To be honest, I'm more nervous about this one than I was about the Princess half marathon. Well, maybe nervous isn't the best word. Probably more frustrated and concerned. Why? Well when I did the Princess I had nothing to compare it too. I was going in blind. So I wasn't worried about times and stuff. I spent more time worrying about what to wear than I did the running part.<br />
<br />
But it's different this time. I know what I did in the Princess. I know what I've done in the 5K's since then. And it's frustrating. By now I should be able to fly through these races. But I don't. I struggle for every mile, every step. For despite a year and a half of running and training I'm still no better than I was then. My time has not improved. I'm still wiped at the finish line. Sure, I know that what matters is that I keep trying. But can you imagine putting your whole heart and soul into something for over a year and never moving forward? Never seeing any progress. It sucks...big time.<br />
<br />
But I'll keep trying because what's my other choice. Plus, I like getting the medals. So, here we go. I hope you'll come along for the journey.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-61449976137155237432013-03-14T13:54:00.001-04:002013-03-14T13:54:30.243-04:00Om, my GodOver the past few months, I have been going to a yoga class every week. It's a nice escape for an hour, even if I have fallen at least once in each class. Yeah, that whole balance thing, which I no longer have, is kinda key in yoga. But it's all good, because for that one hour I get to block out everything else. I've come to value the time to slow down, breathe, and shut out everything else.<br />
<br />
In fact, I enjoy it so much, that I thought maybe I would try to incorporate it more into my everyday life, sans the yoga studio and calming voice of my yoga instructor.<br />
<br />
That was my first mistake.<br />
<br />
So I grabbed a yoga CD I had gotten for Christmas, moved the living room coffee table out of the way, grabbed my mat, and fired up the video.<br />
<br />
I had barely sat down to stretch when our dog began to tug at my mat. I corrected her and continued my practice. One move in, I looked over to see my daughter staring at me.<br />
<br />
"Can I do it with you?"<br />
<br />
I grumbled a bit, but said, "sure."<br />
<br />
By pose two another kid had joined us. Two poses later I had four kids and a dog all attempting to do yoga with me. Suddenly, it occurred to me that if the whole point of yoga was to relax this was not going to work.<br />
<br />
Not wanting to discourage my children's interest in exercise--and quite frankly annoyed by how bendy they all were as opposed to me--I kindly excused myself, went in the kitchen and got a bowl of ice cream. It seemed the next best means of relaxation and peace if I wasn't going to get to do yoga. <br />
<br />
After I finished my ice cream, I decided to abbreviate my home practice and focus more on the meditative aspect of yoga. So I retreated to my room, closed the door, laid down on my bed, closed my eyes and tried to shut out the world around me. It didn't take long for me to realize my home was definitely not a yoga studio.<br />
<br />
Before I could even chant my first "om," I was greeted with the screams of "mom." Close enough, I thought. So each time someone yelled "mom," I replaced it with "om" and went about my business.<br />
<br />
I settled back into the restful pose and tried to focus on my breathing. As I inhaled, I smelled my daughter's new perfume--which she obviously really likes. On the exhale, I puffed out my cheeks in exasperation as I listened to my son and daughter bicker. Inhale--dirty diaper. Exhale--well, more of a sigh than an exhale.<br />
<br />
The door creaked open.<br />
<br />
"Mom," I heard in a voice that was trying to whisper, but was actually louder than a normal speaking voice. I laid still, hoping she would go away.<br />
<br />
"Mom." No luck.<br />
<br />
"Dad, I think something's wrong with Mom. She's not moving."<br />
<br />
I opened one eye to glare at her.<br />
<br />
"Never mind," she screamed. "She's alive." <br />
<br />
I rolled onto my side and asked what she wanted.<br />
<br />
"Can I have a snack?"<br />
<br />
"Go ask your dad," I said rolling back into corpse pose.<br />
<br />
"He already said, 'no'."<br />
<br />
"Then why are you asking me? Can't you see I'm busy?"<br />
<br />
"Looks like you're just lying there doing nothing."<br />
<br />
"I'm trying to meditate. Now go downstairs."<br />
<br />
"What's meditating?"<br />
<br />
"Obviously something I'm not going to get to do," I responded.<br />
<br />
I rolled off the bed, put on my shoes, and headed downstairs where I grabbed my purse and keys. My husband asked where I was going, and I curtly replied, "To find a yoga class that doesn't allow anyone under 18."Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-27227034839494273482013-03-11T12:00:00.000-04:002013-03-11T12:00:52.762-04:00Today is the DayTonight I am starting a sit-to-fit program. I know, it seems a bit ass backward considering I've already done the half-marathon, but I've never been one to do things normally. (My MS is a prime example of that.)<br />
<br />
But I decided that I needed some structure. Lately it's been too easy for me to say, "I'll go to the gym tomorrow" or "I'll start eating better next week." No, it starts tonight...on a track...in the rain. And I'm thrilled. Especially about the running in the rain part. For some reason, the idea of it makes me feel fierce. Maybe it's just because I've seen one to many movies where athletes trained through the elements. We'll see after tonight if I have the same attitude when I'm soaking wet.<br />
<br />In order to prepare myself and reward myself for actually signing up, last night I created an "I'm awesome" playlist. This list joins the others on my iPod, such as "This song has no compelling message, but is good to exercise to," "I'm feeling sorry for myself," and "Why didn't Dexy's Midnight Runner's have more hits? Great '80 songs" soundtracks. What? Doesn't everyone have those types of playlists on their iPods?<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Anyway, I filled my playlist up with songs like "The Champ" by Nelly, "The Fighter" by The Fray, and "Run the World (Girls)" by Beyonce, among others. So I have to ask. What would be on your "I'm awesome" playlist? I'm always looking for additions.<br />
<br />
<div style="text-align: center;">
And don't forget. Be awesome. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/l-gQLqv9f4o?feature=player_embedded' frameborder='0'></iframe></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-61245793052195659462013-03-01T16:03:00.001-05:002017-09-21T15:48:40.202-04:00To Infinity and Beyond<div class="separator" style="clear: both; text-align: center;">
</div>
Let me start by saying: I don't like space. I'm not interested in it. I'm not fascinated by it. Don't want to watch movies about it. Nothing.<br />
<br />
So I considered it a very cruel joke when I went to the neurologist the other day and was told I have "black holes" in my brain.'<br />
<br />
"Excuse me? That's rude. Seriously, you're joking, right?" I said. Of course, given my track record I should have known better.<br />
<br />
"Um, no."<br />
<br />
Wow. That's something I never expected to hear from a doctor. I asked what a black hole was. I mean, I know what a black hole is, just not when it's in your brain. Well, apparently, black holes are when the myelin has been
completely lost and nerve cells have been damaged beyond repair--as into the nether regions of the universe. In short it means that whatever info that nerve was trying to transmit ain't gonna make it. Kind of a big road closed sign.<br />
<br />
Of course, as can happen when you're hit with things like, "Oh, you have black holes in your brain," which I'm sure happens to people all the time, I failed to formulate my well thought out and articulate questions, such as "What the hell?"<br />
<br />
And so I go back to discovery mode seeking out far-off answers and distant explanations. I just hope I don't fall into a black hole along the way.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-86780624503876825772013-01-28T12:40:00.002-05:002013-01-28T12:40:36.576-05:00WowThe other day Mark and I were talking--I don't even remember about what in particular--but at some point I said something out loud that I never had before. It hit me like a ton of bricks. It's wasn't anything that I didn't already know in my mind. It wasn't anything that isn't totally clear to me. But I had never said it out loud. <br />
<br />
I said to him, "I will never get better."<br />
<br />
It seems insignificant, but once I said it, it was like a total epiphany. The realization that short of a cure, this is the rest of my life. No going back to who I once was. No turning back the clock. No regaining what has been lost.<br />
<br />
Bit by bit, I have tried to digest each frustrating piece of this journey--loss of hearing in one ear, fatigue, seizures, cognitive difficulties, depression, the start of hearing loss in both ears. (Geesh, it's a lot more depressing when you list it out like that.) Anywho, with each knock, I have willed myself to get back up and drive forward. What choice do I have? It's never going to change. And I'm never going to get better.<br />
<br />
So there it is. I've named it, spoken it, owned it. I guess the only thing I can do now is keep pushing, keep praying, try new adventures, and have fun. After all, who knows what tomorrow will bring?Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-69673826210935153772013-01-27T22:50:00.000-05:002013-01-27T22:50:29.350-05:00Dear Lance,For the past couple of weeks, I've been taking a hydrorider class at my gym. For anyone who doesn't know what that is, it's basically a spinning class in the water. As in more difficult than on land--and much easier on the butt. Or as I like to think of it, a wet Tour de France. There are imaginary hills, brutal conditions, like when the water is cold, and constant distractions. It's not easy. And often when I'm pedaling away, I think of Lance Armstrong and his fall from grace. I think of what I would say to him if I ever got a chance--cyclist to cyclist.<br />
<br />
Lance, I want you to know that I get it. I get the draw to gain that extra edge. Cycling--on land and in water--is competitive. I want to beat the three other women in my hydrorider class everytime we drop those bikes into the water. But I would be doing myself and the sport of hydroriding (I guess that's what you call it) a disservice if I gave into that urge. Sure, I could easily hit the 'roids and hover longer or pedal all the while I'm working those foam dumbells in the water for a kickass upper body workout, but I'd only be cheating myself. I've had some of the ladies in the locker room push me to do some blood doping, but when you're gifted with natural talent and drive like you and I are, Lance, it doesn't make sense to risk it all.<br />
<br />
It makes me sad that you couldn't see that. So I ride on with a heavy heart and the knowledge that as of right now you and I have the same number of Tour de France wins. See you on the bike.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-50278576457507773152013-01-16T10:30:00.000-05:002013-01-16T10:30:31.080-05:00I'm Checking OutThis weekend, I will be going camping with my son and his Boy Scout troop. OK, technically, he's not a Boy Scout yet. He's what they call a Senior Webelo, though I still don't understand why they chose that name. It makes no sense when all the rest of the Cub Scouts are animals. But I digress.<br />
<br />
For most people, camping with a bunch of fifth graders probably sounds like being sent to hell overnight just for a preview. But something about coming unplugged and checking out from the everyday world--even for one night--sounds like exactly what I need right now.<br />
<br />
So I'm channeling my inner-Thoreau and heading to the woods. Granted, we will be bunking in an indoor cabin with a fireplace. And the boys will be preparing all the meals, which is both a blessing and a curse. It's a blessing in that I don't have to do it, a curse in that the risk of food poisoning greatly increases.<br />
<br />
Despite those perks, it's still camping nonetheless. I mean I will, after all, be sleeping in a sleeping bag on a platform and doing outdoorsy type stuff. But that's OK. Right now, it all sounds like a little bit of heaven. Even if I have to walk through parts of hell to get there.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-49385496500095326702013-01-09T16:11:00.002-05:002013-01-09T16:12:13.718-05:00My Foam Roller and Me<br />
<a href="http://www.power-systems.com/images/Product/icon/80257_1_.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" border="0" id="ProductPic4092" name="ProductPic4092" src="http://www.power-systems.com/images/Product/icon/80257_1_.jpg" /></a>You know how you always hear those stories on shows like <i>Intervention</i> about how the person just tried...whatever...to see what it was like. Then they did it again...and again...and again. Soon they're hiding their activities behind closed doors as they spiral down into addiction. Well, I kind of know how they feel, because, you see, I've become addicted to my foam roller.<br />
<br />
Oh, it started off innocently enough. My friend Krista told me to try it when we were at the gym. Succumbing to her peer pressure, I gave in. It was nice, rolled out the kinks and tight muscles, but nothing great. I thought it would end there. But the next time I was at the gym I tried it again. Wow, it really did relieve all the aches and pains. Pretty soon I was ending each workout by using the foam roller. It was becoming my reason for going to the gym in the first place. <i>I'll run--if I get to use the foam roller when I'm done</i>, I would tell myself. <i>One more mile and you can have another five minutes of alone time with the foam roller</i>, I'd rationalize.<br />
<br />
<br />
At home, I gushed about the magic foam roller. So much so that Mark and the kids bought me one. I hoarded it. I kept it from the kids. Before long, I was using it at the gym and at home...more than once a day. But as hard as I tried to keep my obsession under wraps, the harder it became. From the amount of time I was spending at the gym, my family thought I was training for the Ironman--and I would have if I knew I got to use my foam roller at the end.<br />
<br />
<a href="http://www.power-systems.com/images/product/medium/80189_1_.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Rumble Roller" border="0" id="productImage" src="http://www.power-systems.com/images/product/medium/80189_1_.jpg" /></a>When I hit rock bottom, I was using the foam roller multiple times a day. I rationalized my use by pointing out how good it was for me. And, anyway, it's not like I was using one like this one. That would just be weird. <br />
<br />
And why shouldn't I use one? According to the one website touting the rollers, they "are inexpensive, yet highly effective tools that
relieve soft tissue pain and muscle pain. Athletes often use them to
break up scar tissue and painful adhesions that develop after years of
workouts. Using foam rollers is similar to getting a massage from a
bodywork professional, but you can use the rollers on your own at home
or in a gym." I'm sold.<br />
<br />
So if you're looking for me at the gym, go ahead and scan the machines. Chances are I won't be there. I'll be wherever the foam rollers are. <br />
<div class="box1">
</div>
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-26922825355042030102012-12-28T16:09:00.000-05:002012-12-28T16:09:39.996-05:00Eat my Dust, Dora<div style="text-align: left;">
</div>
<div class="" style="clear: both;">
You know how Dora and her monkey-friend Boots always go on adventures? (Which makes me question her parent's abilities to raise their child, but I digress.)</div>
<br />
<br />
<a href="https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcRDSnXo4ABSyNWURygcW75k8bwvtnLXBeq89GA7II9vwbF2kMvpXw" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" border="0" class="rg_hi uh_hi" data-height="266" data-width="189" height="200" id="rg_hi" src="https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcRDSnXo4ABSyNWURygcW75k8bwvtnLXBeq89GA7II9vwbF2kMvpXw" style="height: 266px; width: 189px;" width="142" /></a>Well, just like Dora and Boots, Mark and I have decided to go on an adventure. The only difference is that my head's not oval and he's not a monkey. But we are probably going to have to cross a bridge, scale something and follow a map--not a singing one, just a regular old map.<br />
<br />
You see, we're going to take on Disney's <a href="http://www.rundisney.com/expedition-everest-challenge/" target="_blank">Expedition Everest Challenge</a>
this May. It's a 5K race with challenges along the course, and a
scavenger hunt at the end of the race. Sounds very Dora the Explorer-y
doesn't it?<br />
<br />
Granted, a 5K--even with challenges--seems a bit of a step down from our half marathon last year. So to make up for that, we have decided that our goal is to run the entire thing. Maybe that will happen, maybe it won't. But it's sure going to be fun trying.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJRSAwe0VMzzdhHkKYwtiMUTetppeBNmB6t7cuBPz7ZsU56ykKgGwpli5357Jbo8roRqGPHa4eXHObMAHpCh04s_qENXBe7Sr6e324utrecT2-61rXvMHfm3bcRk-4TlW7WP-buue_bkAx/s1600/eec.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="219" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJRSAwe0VMzzdhHkKYwtiMUTetppeBNmB6t7cuBPz7ZsU56ykKgGwpli5357Jbo8roRqGPHa4eXHObMAHpCh04s_qENXBe7Sr6e324utrecT2-61rXvMHfm3bcRk-4TlW7WP-buue_bkAx/s320/eec.jpg" width="320" /></a><br />
As for costumes, now that I think about it, maybe Dora is the way to go. I totally could see me
running in her cute orange shorts and pink t-shirt. The backpack could be a bit troublesome, but I'm sure I can work it out. Mark can wear a
monkey hat. After wearing a tutu last year, I'm sure he'd consider it a step up.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560486399652472792.post-57293649029926065892012-12-21T16:39:00.001-05:002012-12-21T16:39:43.451-05:00A Christmas Letter to MyselfHey you. Yeah, you...Susan. I saw you last night when you were trying to wrap those presents and you lost it because Riley ripped the paper. Yeah, I saw your expression and the way you snatched the present back. Not cool. I also saw the look in Riley's eyes. The one that said, "I didn't try to rip it. It was an accident." But you probably didn't see that because you were too busy huffing and cutting a new piece of wrapping paper.<br />
<br />
Well, now that you're calmed down I want to tell you something. It doesn't matter. It doesn't matter how your presents are wrapped. In fact, I would venture to say it doesn't even matter if they are. It doesn't matter that you didn't make any cookies, or get your Christmas card out before Christmas. I know you think it does, but it really doesn't.<br />
<br />
Christmas will still come. You will still be surrounded by the people you love, and who matter most to you. You will be able to hug them, and tell them how much they mean to you--regardless of whether or not you gave them cookies.<br />
<br />
So, please, slow down, quit freaking out and take a breath. You'll be fine. Everything will be fine, and just as it should be--whether you believe that or not. But I hope you do. And I hope you have a very Merry Christmas.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-85833601752625053732012-12-19T16:35:00.001-05:002012-12-19T16:35:23.892-05:00The Truth, The Whole Truth, and Nothing but the TruthWhen I started this blog, I wanted it to be an honest and open look at life with a chronic illness. And I have tried to stick with that. And while I try my best to stay positive, it's not all sunshine and puppy dogs. So that leads me to this post.<br />
<br />
<br />
Recently, some of my friends started taking part in something they call Tell the Truth Tuesday. It is a day when you reveal some truth that you wouldn't normally share. Inspired by their idea, I decided to run with the idea concerning my MS. So, here are my truths:<br />
<br />
I am terrified.<br />
<br />
I worry people think I talk too much about my disease, so I keep a lot inside.<br />
<br />
It frustrates me that I can't make people understand the difference between being tired and fatigue. They are completely different.<br />
<br />
I hate the fact that I can't be spontaneous anymore, and have to plan every day meticulously so I have enough energy to make it to bedtime.<br />
<br />
I'm tired of people lecturing me about drinking too much pop when the caffeine is sometimes the only way I can make it through the day.<br />
<br />
I want to be able to enjoy a long, hot bath, or a soak in a hot tub, like I used to, without my face going numb and my symptoms flaring up.<br />
<br />
I feel guilty because my husband never bargained for this. My kids didn't either.<br />
<br />
I wish I could be the mom that I always dreamed I'd be--active, high energy, on the ball, able to juggle a lot of things at once.<br />
<br />
I feel stupid when I forget things, or can't find the right words, and people look at me like I'm the biggest flake in the world.<br />
<br />
There is not a minute of a day that I don't think/worry about this disease.<br />
<br />
I work really, really, really hard at trying to not let this drag me down.Some days it's just too hard, though.<br />
<br />
I'm tired of sticking a needle into myself--especially my stomach--and how it's starting to make me look.<br />
<br />
It's hard for me to remember the last time I didn't feel like crap.<br />
<br />
I want to be stronger than this disease. I want to be one of those people who sees their illness as some sort of blessing. But I don't know how to get there, and that frustrates me.<br />
<br />
Each of these represents another hurdle I have to climb--at this point, jumping hurdles seems out of the question. But I'll do it. It's just gonna take a little time. Until then, I'll just keep sharing my truth. <br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-61264743959894275322012-12-11T22:55:00.001-05:002012-12-11T22:55:56.343-05:00In Search of AdventureIn my daughter's favorite movie <em>Tangled</em>, all Rapunzel wants is to see the floating lanterns. When she finally does, she tells Flynn Rider that she's scared because, what if the experience doesn't live up to what she's expected. And then once she sees them, what does she do next? He replies that she gets to go off and find a new adventure.<br />
<br />
I can so relate to that scene in the movie. The Princess Half Marathon was kinda like my floating lanterns. I did it and now I don't know what to do. I've done other races, 5K's mostly, and they were fun, but they just weren't the same.<br />
<br />
Maybe it's because it was my first. Maybe it was because it was a big accomplishment. Maybe it was just the fact that Mark and I got to go away together. I'm not sure, but I feel like I want that feeling again, and I don't know how to get it back.<br />
<br />
Of course, I could always go for a full marathon (that's 26.2 miles, you know. See, I'm getting good at this.) but that's just a stupid idea. Even I know that. I could always do the Princess again, but will it be the same? Should I try a different Disney race? A race somewhere else? I don't know.<br />
<br />
What I do know is that I'm still searching for my next great adventure. Stay tuned. Suggestions are welcome.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-28273538354714305262012-11-16T19:14:00.000-05:002017-09-21T16:03:18.824-04:00Project Pinterest<br />
<div style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;">
<br /></div>
<br />
I had an epiphany today. I will be dead, buried, and turned to dust before I will ever do all the things that are currently on my Pinterest board. No, really, it's true. You see, that's the problem with Pinterest. It's just to easy to pin...and pin...and then pin some more. Your first pin seems so innocent, and then before you know it you can't stop and you have 200 must-try recipes, and your home at the holidays is going to look like the North Pole following an elf bender.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div>
<br /></div>
<div>
So, I decided to take back my boards. I told myself that I was going to actually do the things that I had pinned. Recipe not up to par? Off my board it goes.</div>
<div>
<br /></div>
<div>
Some things I've already vetted--one potato recipe that went horribly wrong. I was supposed to squish down the tiny red potatoes after they had been cooked. You know, kinda flatten them. Well, it didn't quite work out that way. I tried to smash it and it shot off the sheet and across the room. The rest I threw across the room after unsuccessfully trying to mash them.</div>
<div>
<br /></div>
<div>
Now, of course, I have to be realistic. I'm still going to pin. How can I not? But I do solemnly swear that for every thing I pin, I will try my best to remove another. Also, I'm not going to count some of my pins. I mean am I really ever going to live here? Maybe I'll visit someday, though, so it stays on my board.</div>
<div>
<br /></div>
<div>
And what are the real chances that I'm going to get a meaningful relationship out of this guy? But it's still fun to pin him on my boyfriends board.</div>
<div>
<br /></div>
<div>
<a href="http://media-cache0.pinterest.com/upload/53480314294541461_ngXzempF_b.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="." border="0" src="https://media-cache0.pinterest.com/upload/53480314294541461_ngXzempF_b.jpg" /></a>The inspirational and funny quotes stay. Who knows when I may need to say something deep or humorous in a group setting. Or even drop a powerful insult or comeback. It's always good to have those things on hand.</div>
<div>
<br /></div>
<div>
So today starts Operation Project Pinterest. Wanna join me? </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-61294859029624841582012-11-14T11:59:00.000-05:002012-11-14T11:59:05.560-05:00Back in the SaddleFor some reason, this seems so appropriate right now. Except I can't whistle. On the bright side (get it?), though, I can still hear every word they're singing, at least for now. Hope you all find a way to look one the bright side today. :)<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/SJUhlRoBL8M?feature=player_embedded' frameborder='0'></iframe></div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560486399652472792.post-87856266095466220422012-11-13T16:25:00.000-05:002012-11-13T16:25:12.630-05:00Another Bump in the RoadLa la la la....I can't hear you. No, seriously. I can't hear you. Well, I mean I can hear you, but just not real good. And I can't always make out what you're saying.<br />
<br />
You see, apparently my brain has decided that it doesn't really want to send sounds to my ears so I can clearly make out what people are saying. I knew the hearing in my right ear sucked. It's been that way for about 10 years--since this whole MS thing started. But now my left ear's decided it wants to get in on the action.<br />
<br />I started noticing it when I was in noisy places. It became harder and harder for me to hear what people were saying, and you can only say "what?" so many times before it gets a) embarrassing and b) annoying to whoever is trying to talk to you.<br />
<br />
According to the ear doctor, what's happening is the noise is getting in my ear, but just not getting processed by my brain. My ears are fine. My brain is not. As if that's a shocker to me. That's why when I'm in a crowd or someplace like a noisy restaurant, or even a meeting, it's hard to hear. My brain is trying to decifer all the information it's receiving and basically just freaking out and making it all sound like Charlie Brown's mother on the phone.<br />
<br />
So what to do? What to do? Well, the doctor says it may get better. Or, it may stay the same. Or, it may get worse. Real definitive answers, right? I seem to get that a lot with doctors these days. He said in a few months we could look into hearing aids and see if that may help some. But it might not.<br />
<br />
But for now, I guess I'll have to pick myself back up again and keep moving forward. Sometimes, like now, it's just a little harder.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4560486399652472792.post-23755190779870674972012-11-05T11:35:00.001-05:002012-11-05T11:35:52.096-05:00Take Care of My CribYesterday we took down our crib for the last time. I cried the whole time. It's going to a good home where it will be put to good use. But the problem is, see, it's not in my home...with one of my babies in it. And that's hard. But it's time.<br />
<br />
To the couple putting their baby to sleep in that crib, take care of it. I know it may not look brand-spanking new, but it's been well used, loved, and taken care of. Let me tell you about its history.<br />
<br />
It's 13 years old. We excitedly got it when we found out we were expecting our first child. We really couldn't afford it at the time--it was a pretty high-end purchase for us--but we wanted our babies to have a top-of-the-line bed. Sometimes I would go into the nursery and just stare at it before Maddie was born. I'd arrange and rearrange the blanket and stuffed animals awaiting her arrival. Now we're filling out high school registrations for her.<br />
<br />
When she decided to escape one day, we converted it to the daybed, which she also bucked. We dismantled it and put it in storage for the next time.<br />
<br />
When Alex came along, he didn't spend much time in it the first year. He was sick, you see, so he stayed in our room most of the time. But in time, he also made his way into the crib, where he treated the mattress like a trampoline. But don't worry, we fixed the springs he detached in the process, so it's fine now.<br />
<br />
Then there was Riley. If you see the teethmarks on the side of the bed, that would be from her. Her height was just at that level and she used to chew on it when she woke up before we got her out. Never crying, never yelling, just standing there chewing when we'd walk in.<br />
<br />
And finally came Kacey. Thanks to this damn disease, I knew she would be my last. Not by choice. In fact, I was already pushing the limits of my MS by foregoing treatment so I could have both her and Riley. My brain and body knew it was time. My heart still doesn't.<br />
<br />
It was while I was out of town that I found out she had left her crib for a big-girl bed, never to return again. I'm not taking it well. So yesterday when I dismantled the crib and loaded it up to be delivered to you, I was closing a door I wasn't ready to close yet. But I send it to you with love and hopes that years from now, you, too, will be able to remember all the times you laid your baby to sleep in that crib. I know I do.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4560486399652472792.post-16845283838506318132012-11-02T14:14:00.002-04:002012-11-02T14:14:23.680-04:00Time Out, PleaseAs I write this, I am sitting in the back of my car handing out candy for Halloween. Maddie is at her friend's house. Alex took off with his friends and one of their dad's, and Riley and Kacey are with Mark. It's just one more example of how things are changing--too fast.<br />
<br />
I remember when I could take a picture of all of them in their costumes. Now kids are missing, and other friends have moved into the photo. It's different, and I'm having trouble adjusting.<br />
<br />
Over the past couple weeks, Mark, Maddie and I have gone on two high school visits. High school. As is not grade school. No, this can't be happening.<br />
<br />
Last week, Kacey climbed out of her crib--forever--and straight into a "big-girl bed." And there she has stayed ever since while an empty crib sits across the room. This weekend we will be dismantling it--never to be put together by us again. It's breaking my heart.<br />
<br />
Now, it's not like I didn't realize that changes like this were going to happen. I've heard all the advice to relish the time you have with your kids. As Gretchen Rubin, author of the Happiness Project, points out, "The days are long, but the years are short."<br />
<br />
I've tried to hold on to each tender moment and milestone. But lately, I'm losing my grip. Big girl beds, high school applications, first Communions, graduations, friends replacing parents. Life is whizzing by too fast. And I don't like it. Not one bit.<br />
<br />
Unknownnoreply@blogger.com0