Confessions of a Narcoleptic

Have You Hugged Your Narcoleptic Today?

noreply@blogger.com (NarcoGirl) — Wed, 25 Jan 2012 03:31:00 +0000

For those of you who are wondering, yes-I did fall asleep during my root canal this morning. I even woke myself up snoring a time or two, you know those one time deep cleansing breath sort of deals where you do it once and go back to not snoring. I really had to laugh though- I was talking with the hygienist and said it was nice to get a nap in. She commented that she felt so bad for me because she thought I'd not been able to sleep all weekend due to the pain in the tooth. I laughed and told her I'd pretty much slept all day Sunday, which surprised her. It was at that point that I reminded her of my narcolepsy. Yep, that would do it, she said. I'm sure it didn't help that I've skipped both my Xyrem and my Nuvigil for the last few days (again, didn't want to mix them with Vicoden). The antibiotics they gave me continue to make me sick to my stomach, or maybe its the $2500 dental bill that did it-the thought of it is making me nauseous at this very moment.

It was near 11:00 am by the time I finally got home and I knew right away that my master plan of cleaning out another room was just not going to happen. I really tried though. I cleaned and organized the upstairs guest room enough to allow most of the stuff from the downstairs guest room to be moved up there. By the time that was done the anesthetic shots the dentist gave me were wearing off and the pain was intense. According to my dentist, I am one of the 7% of the population that does not respond to the regular pain block shots they give you before doing something like a root canal. I was still feeling what he was doing after two numbing shots so he gave me some sort of shot that they normally don't give patients according to the hygienist. I'm not sure what it was exactly, but when he gave it to me I swear he was standing on the damn needle. I've never felt so much pressure-I felt like he was trying to push something through my jaw and out the bottom. After all was said and done, they showed me exactly what he had used. It was this science fiction looking needle gun thing with about a two inch needle on the end. Incredulous, I asked if they'd put the whole needle in my face and she said they had. The extreme pressure I felt was because the needle had to be inserted down into the ligament. She also showed me a used needle that had actually been bent under the force of my dentist pushing on it. It was interesting to say the least. I was told that when it wore off I'd feel like I'd been hit in the face with a baseball bat, and it might be that way for a couple of weeks. She wasn't kidding. I popped a pain killer and not too much more got done after that.

Thankfully I have fantastically awesome kids. The three of us were chatting a bit as I was making dinner and RJ offered my part of his snack. When I told him why I wouldn't be able to eat anything solid just yet, DJ insisted on spoon feeding me a Jello pudding cup while I cooked up the chicken for my chicken cacciatori. What a sweet kid. On a side note, I've been reading this book, You Can't Make Me, but I Can Be Persuaded, and its really given me some awesome insights and strategies for understanding and dealing with my strong willed twins. DJ came home today and jumped right in doing things I needed done as I cooked dinner. RJ wasn't as eager (he's my couch potato kid) but he happily did the things I asked him too. It makes my job as a mom so much easier when the boys cooperate, and my life as a narcoleptic mom a hundred times easier when I can calmly delegate things on my to do list to them. It also helps tremendously that The Hubby knows I have limitations and never ever makes me feel guilty about it. Our days are usually filled with texts to each other, and today he kept telling me to just sit back and rest. Since he started his own business last year he's done a ton to make my life easier and less stressful. He takes the kids to school and picks them up in the afternoon. He also makes dinner and bathes the boys-all things I had done in the past due to his crazy long days. Now all that stress is off my shoulders, and he never complains about it either. All you reading this who are family members of someone with narcolepsy, listen up. The actions and attitudes of family members can play a huge part in what sort of experience your narcoleptic loved one has with it. If you make them feel like a burden, or guilt trip them, of accuse them of being lazy you're heaping stress on them that only makes symptoms worse-trust me, I know. On the other hand, if you want to be awesome then do what you can to take some of the burden off. I'm not saying take on everything and run yourself into the ground. It can be as simple as saying, why don't you go rest for an hour. Or giving your narco a hug and letting them know how much you love them, and that they are a very important part of your life. One big insecurity we have as narcoleptics is feeling guilt for all the stuff we're too tired to take care of. Guilt for things we have to miss or cancel out on because we're too worn out-especially sucky if its something for your kids. I guarantee there's not a narcoleptic person out there who enjoys being narcoleptic. Many times people who have a narcoleptic loved one simply don't have any idea how to process everything-The Hubby went through that big time. There are resources. Google it. Ask questions. Go with to doc appointments. Ask your narco about it. Don't ignore it because it isn't going away.

Okay, I didn't mean to go off on that tangent tonight, but its all true, valid and relevant. There are also a gaggle of us narco bloggers out in cyberspace who are more than happy to try to answer question or point people in the right direction. I have a growing list of some other bloggers along the right side of this page. Alrighty then. Time to check on the kids and try to go back to bed. *YAWN* Nighty night!

Calm Before The Storm

noreply@blogger.com (NarcoGirl) — Mon, 23 Jan 2012 19:34:00 +0000

I'm actually quite proud of the progress we made over the weekend in readying our house for the arrival of my in-laws next Saturday. I unwittingly made the job a lot easier by overhauling DJ's room on Thursday after my dentist appointment. I was home drooling on myself so I figured I had the time. It took several hours (I swear he's a 6 year old hoarder) but in the end it was clean and organized to my type A standards. When The Hubby and I talked about his family moving in with us for awhile, we decided to free up a bedroom by bunking the boys together in one room. It was a whole lot easier to do with DJ's room newly cleaned out and organized. I wasn't sure how they'd do with sharing a room again, but they really seem to be enjoying it. They played more in their room in the last two days than they ever have since we've been in the house. I really tried to get as much done as possible without sitting down-once I stop its amazingly difficult to get going again. The narco waves just wash over me and I'm usually down for the count.

About halfway through the day on Saturday the pain from my infected back tooth was bad enough to warrant a call to my dentist for those pain meds and antibiotics he'd mentioned. I left a message on the after hours line, and when he returned my call a couple of hours later all I said was, "This hurts", to which he replied, "I know". You have to appreciate the simplicity there. By five that afternoon I was cruising along the Vicoden highway pushing three times daily antibiotics. I skipped my Nuvigil that morning just in case it became necessary to pop some pain killers-it just doesn't seem prudent to take something to jack me up then take something else that makes me sleepy. The Vicoden didn't put me completely out, but they did slow me down /mellow me out. Not a feeling I liked very much. I continued to move stuff around and reorganize rooms so they'd be ready by move in time. By the Saturday night we had the boys moved in together and comfortable, one bedroom cleared out and move in ready (complete with freshly washed bed linens thank you very much), and an almost cleared out Florida room ready to be converted to a three person office for The Hubby's business. Only one more bedroom and closet to clear out and we'll be more or less finished. Our bedroom (The Hubby and mine) will be pretty chaotic as its turning into a catch all for some of the stuff that needs to be stored away, but it shouldn't take me long to get it in order.

The problem about Saturday is that I worked really hard which contributed to my complete crash on Sunday. I got up and was about halfway ready for church before I decided it just wasn't going to happen. The antibiotics and pain meds were making me a bit sick to my stomach, and it hurt to open my mouth. Not a condition conducive to singing in front of the congregation. I texted everyone I needed to and cancelled a play date with a friend of the boys' for that afternoon. I think I was asleep on the couch before The Hubby even walked out the door for church. My twins stayed home with me on the grounds that somebody needed to be there to take of Mom. They did a good job letting me sleep though. At one point I moved from the couch to one of their beds so I could at least sort of hang out with them a bit. I pretty much slept on and off the entire day. I was running on no Xyrem, no Nuvigil and pain pills that could (and did) cause drowsiness. I had no chance.

For the last few months I've been trying to explain narcolepsy to my kiddos little bits at a time. They know that Mom has a condition that makes her really sleepy, and that I take medicine to help me stay awake. When they asked why I just explained that God did it for a reason, even if I don't understand what that reason is. They're completely good with that. I know they understand what I've told them so far but it still took me aback a little when DJ asked me at the dinner table whether or not I took my medicine since I had been sleeping most of the day. Its encouraging to know that some things I say do get through...lol.

Today is better-not as much pain, probably due to the antibiotics (no painkillers as I had to drive this morning). Hopefully tomorrow after my root canal I'll be able to finish up with what's left to do in order to make a place for everyone. After that, I'll just need to take a deep breath and hope for the best......

Well I Didn't See That One Coming.

noreply@blogger.com (NarcoGirl) — Sat, 21 Jan 2012 02:30:00 +0000

I learned the hard way that the fillings in your teeth do not last for the duration. I had several teeth filled as a kid-back when they gave you the silver fillings. I didn't realize that those kinds of fillings expand and contract with heat and cold (which makes sense, but not something I ever thought about). Over time that expansion and contraction can break your tooth apart which is what happened to me just a couple months ago. One very very expensive root canal later, I decided to go ahead and replace all my old fillings before any more damage could be done to my other teeth. I've always taken very good care of my teeth-did the braces thing and still have wires behind my front top and bottom teeth that act as permanent retainers. I was pretty mortified to find out how much work I had to have done. So yesterday I went in to have several filling redone. Things started out great-I kicked off my boots and snuggled up with the blanket that my dentist's office always covers me with (how cool is that). I stuck my ear buds in, hit play on my audio book and laid back in the chair for a snooze.

After a while the dental assistant tells me they were about to start the last tooth. I noticed that it was taking a while longer than the other teeth, and I recognized the taste of blood. Not good. Before we started I made sure to remind them that I take blood thinners just in case. A few minutes later they took all their gear out of my mouth and sat me up. The news wasn't good. After prying out the old filling, they discovered that there was quite a bit of damage underneath it. Turns out there was an infection that went all the way down to the nerve-strange I never felt it. Then it started bleeding and they couldn't get the bleeding to stop. My dentist tells me I need to have another root canal as soon as possible. Crap-just what I was trying to avoid. Okay, fine. The first thing they had was Tuesday morning, but put me at the top of the cancellation list just in case. They told me to make sure to call if the pain gets too bad so they can call me in some antibiotics and pain meds. Sure, whatever-it didn't hurt before and I really didn't think it would hurt to where I would need pain killers. Wow was I wrong. The entire left side of my face is feels like someone hauled off and clocked me. I have a pretty high pain tolerance but I'm seriously considering throwing up the white flag and calling for the pain killers. It hurts almost as much as the heart attack I had when they handed me an estimated bill for $3500-including the cost of the upcoming root canal. Note to self-find out the going rate for selling a kidney on the black market.......

In other ridiculously big and unexpected news, due to a really complicated and messed up family matter, my mother, father and brother-in-law will be moving in with us next weekend. Not sure for how long-probably awhile. I just found this out tonight. I have so much work to do to make room for everyone and not a lot of time to do it in. We're going to move the boys to one bedroom to make room for my brother-in-law. After that I have the daunting task of cleaning out my catch all guest room for my other in-laws. The very thought of it is exhausting. Yes, prayers are greatly appreciated-especially prayers for my sanity. Should make for some interesting posts in the near future.

Real Life In Real Time

noreply@blogger.com (NarcoGirl) — Thu, 19 Jan 2012 06:29:00 +0000

So its been awhile. In the last couple weeks I've seen a pulmonologist who confirmed my theory about why I've been coughing up blood. One fun fact you may not know is that my stomach doesn't empty properly, which was discovered after tracking the path of some radioactively altered scrambled eggs a few years back. Long story short, sometimes when I sleep the stuff that's been sitting in my stomach refluxes itself back up and I end up aspirating it. Not good if one is out cold on the Xyrem expressway. Usually I just wake up choking and have to either toss whatever is left in my stomach or I stay up for a couple hours watching whatever comes on in the wee hours of the morning. Apparently the stomach acid I've been breathing in is burning my lungs, causing the bleeding. Makes sense. There's nothing that can be done about it according to the pulmonologist (who was so very awesome btw) because the capillaries are so small and he said they'd never be able to isolate the exact spot that's bleeding. Which is good I'm thinking because essentially its not a big enough problem to have to fix it. I did some breathing tests that caused him some concern though. For one of the tests I had to walk four laps around the appointment desk area while they monitored my oxygen saturation and heart rate. Not a big deal to me, but apparently just that couple laps elevated my heart rate way more than it should have. He gave me copies of the results and advised me to consult my rheumatologist about it (fantastic-she never listens to me). I see her in February so I have no idea what, if anything, I need to be doing about it. Such is life when none of your specialists talk to each other.

Now that Christmas break is over, all my family's extracurriculars start up again. As luck would have it, I've been able to cut back from three scheduled nights a week to just one. Tuesday night trio practice has been temporarily moved to Saturdays through tax season, and I've had to suspend my Friday night guitar lessons due to budgetary concerns. That one sucks, but its one less thing to suck up my time. Wednesday nights are my marathon nights-after work I have about ten minutes to change, grab the kids and head to our church for children's choir followed immediately by my choir practice, followed immediately by a separate practice for the smaller group of us who serve as worship leaders each week. I have enough new music to learn to keep me busy for a good long while. Its a little stressful, but I'm very thankful to have so many opportunities to do something I love so much.

In a perfect world, there would be no other stresses to deal with seeing as my stressometer is about maxed out. Of course this is not how the world works though. My younger son is having some problems in school as far as staying on task and getting things done. Its gotten to the point where The Hubby and I have gotten calls from the vice principal regarding his behavior. We've tried everything to try to fix the problem and get him to change his behavior but we're just stumped. He's not a bad kid-he's actually one of the sweetest little kids I've ever seen (and I'm not saying that because I'm his mom). He's just always on his own time table. Interestingly enough, his twin brother is doing just fine. Its fascinating to me how different my boys are. They're fraternal twins, only a minute apart but personality wise they're polar opposites. Its like God knew I'd only be able to be pregnant one time so he not only gave me a two for one, but he gave me two little guys each with his own unique personality. One kid looks like me and the other kid looks like The Hubby-RJ has dark hair and tans super easy like his dad, and DJ has very fair skin and blonde hair like me. So far neither has any of my medical problems and I hope it stays that way. This whole parenting thing is definitely the most difficult thing I've ever done-and I have no idea what I'm doing.

There are several other things going on-big things, but I think they'll have to wait for the next post. Its late and its way past my bedtime. Stay tuned for the next installment....

Just Put A Little Tussin On It

noreply@blogger.com (NarcoGirl) — Tue, 20 Dec 2011 21:10:00 +0000

As always, things have been extremely busy here. Since my last post, we've performed the much anticipated Christmas pageant and it went great. Both my boys' first grade teachers came and the kids were completely psyched about that. I'm just relieved that all the work is done-at least until the spring production. The Hubby and I were also able to get out for a date night! Technically I guess it was a quadruple date night since we went with 3 other couples, but we all had a blast. Last weekend I really went for the gusto-I spent the day Saturday teaching a friend how to make jewelry and spent the evening with The Hubby and our boys at our Sunday school class Christmas party (which was a crazy good time). In between the events of my full social calendar (ha!) I've been trying to get the Christmas shopping done here and there. I think I'm about done, save for the projects I still have to finish up. I'm making a watch with interchangeable beaded bands for my mother-in-law and some bracelets for my closest girlfriends. Yeah, I know-time is running out. Trust me, I know.

I've been feeling fairly normal lately...you know, like sometimes you'll have those time periods where things are on an even keel health wise and things are good. I'm feeling relatively good, with one glaring exception-I've had a couple of episodes of hacking up blood over the last two weeks. The first time I sort of blew it off as some sort of weird fluke, but last week I sneezed up an alarmingly large wad of blood (sorry this is gross). I don't scare easily as far as weird health stuff goes, but the amount of blood the came up prompted a call to my doc. I called my PCP because honestly I didn't know who I was supposed to call. My Gastroenterologist? My Rheumatologist (who you know I don't trust to begin with)? So I just went with my PCP. He didn't have an appointment available, but they got me in quickly with another doc in the practice. He was fairly perplexed. My lungs sounded clear to him, and an xray would later confirm this. I told him I felt good except for a little burning in my chest, so what's the deal with the hacking up blood? He referred me to another -ologist....a pulmonologist this time. I suppressed a groan of frustration. I have all these different -ologists and none of them confer with each other. Even when I request clinical notes be faxed from one to another, it rarely actually happens. So in my mind, this is just another ologist who is going to be depending mainly on me and my crappy memory to tell him everything pertinent to what he's seeing me for. How much do you tell him? My entire medical history would take forever, plus there's all the little incidental things going on that are so numerous I have a hard time buying all of it myself. Sometimes I honestly just accidentally leave something out. Or I'll leave things out that I don't think could possibly be important, but are. Or I'll go ahead and lay everything out only to have the doc look at me like I'm a nut job. Good times.

In addition to this latest puzzle, I was recently informed that my health insurance premiums are going to go up nearly $100 a month starting in January. Oh yeah-the deductible will be doubling too. The funny thing is instead of telling us in person, we employees were directed to a trilogy of podcasts on the company website which were supposed to explain all the 2012 changes. One of the videos had a section on ways to lower your cost share-always good information to have, I thought. Now I swear this is the truth-one slide said to take advantage of the preventative services benefits of whatever health plan you chose, and the next slide honestly advised the plan member to determine whether or not the tests ordered by the doctor are really necessary. If I'm lying I'm dying here. One of the examples had to do with an MRI and if it were really necessary. Now how in the heck would I know this? After all the years of school it takes to become a doctor, I'm sort of trusting him to know if I need an MRI of something. Yes, I realize that there are times when unnecessary tests may be done, but I wouldn't have the first qualification needed to determine the necessity of something like an MRI. The way the presentation was worded really made it come off as, hey-if you have the tests done we're gonna jack your premiums up next year, its up to you. Time to brush up on my armchair doctoring-just put a little Tussin on it. Insurance is such a racket.

Well, only 5 days until Christmas so if I don't get a chance to post between now and then, have a very Merry Christmas everyone!!!!

Balancing My Energy Budget

noreply@blogger.com (NarcoGirl) — Sat, 10 Dec 2011 02:00:00 +0000

The boys and I got home about an hour ago after running dress rehearsal at the church. Note to self-draw up cue cards for kids who haven't memorized their lines. I was able to memorize and successfully execute about 99% of the choreography and I'm more than satisfied with that (yay for me!). I've put everything, and I mean everything, on the back burner while trying to master this pageant thing. Normally The Hubby would have my back at times like these, and would graciously pick up my slack. However he had to leave yesterday on another business trip so its just me and my mini-me's for the next ten days or so. We both hate that he's going to miss the boys first church musical. Somehow his presence makes everything seem less stressful. When I said I've put everything on the back burner, I mean that I'm sitting here looking at piles of laundry scattered around like landmines wherever my boys decided to take them off. The trash needs to be taken out, dishes are piled up, bathrooms need to be scrubbed, several days worth of mail needs to be sorted and bills need to be paid. Holy crap am I feeling overwhelmed. The boys are passed out so this would be the perfect time for me to be cleaning but I'm too tired. I forgot to take my Nuvigil this morning and all I want to do at this moment is to throw on some comfy sweats, snuggle up with my soft fleecy blanket and pass out until I feel like waking up. There it is....my dream staycation.

One good thing about this whole Narcolepsy thing is that its doing a lot to break me of my type A tendencies. I just flat out don't have the energy to obsess over every little thing like I used to. I'm too damn tired. Even more amazing is the fact that I'm letting things go and concentrating more on the things that are really important-like spending my quality waking time with my family. To that end, I'm throwing all caution to the wind, throwing up my hands as far as the housework is concerned and taking the boys to a matinee tomorrow. If I could only give one piece of advice to someone dealing with a chronic condition, it would be this-don't waste what energy you have worrying about things that don't matter in the long run. Figure out what's important and spend time on it. Tomorrow I could banish the kidlets to their rooms and spend the day scrubbing the house until it shines, but that would only make all three of us cranky and irritable. No, I'm going to take the afternoon and spend it on lunch and a movie with my babies. I'll still do some cleaning up, but I'm not going to run myself into the ground-things will only be messed up again by nightfall so what's the point. I'll spend my energy building some good family memories.

Now where did I put that fleecy blanket of mine....

Fake It Until You Make It.

noreply@blogger.com (NarcoGirl) — Fri, 09 Dec 2011 02:34:00 +0000

I love Christmas-its one of my favorite holidays ever. I love Christmas lights, Christmas carols, sending and receiving Christmas cards, and seeing the church sanctuary all decorated up. As a born and raised Wisconsinite, 99% of my seasonal memories include a white Christmas-I still miss them terribly, even though I've been a deep south transplant for almost a decade. Its hard to wrap my head around the fact that my kiddos have never experienced a white Christmas. Coming back to the point, I'm going to need you to close your eyes and try to visualize the story I'm about to tell you-makes it easier to see the hilarity of the situation I think.

First, answer true or false-Narcoleptic people have fantastic memories. Every narcoleptic person knows the answer to that is a big fat false. Keeping that in mind, let me remind you about what my function is in the big machine that is the annual church Christmas pageant. My job is to learn the choreography for the entire shooting match so the choir kids can follow me as I lead them from a position on the floor in front of the stage. In a perfect world, this shouldn't be an issue-just learn the moves and lead the ankle biters (two of which are my own). But I live in Narcoland where things aren't always just that simple. To be sure, I've been working hard to learn what I need to learn, and I've been doing fairly well-but I just have to tell you about our last rehearsal.

So there I was. Standing in front of the stage with 20 or so sets of little kid eyes locked on me, ready to follow my every move. I started strong and the kids were actually paying attention-anyone who has any experience working with a group of kids knows how rare this can be. Things were going great-until I blanked out. Everything I'd been cramming into my brain was just gone! To their credit, the kids kept right on singing which was great. However, I learned just how attentive they actually were when I happened to glance around. I had my hands on my hips as I tried to recall something-anything.....and noticed that all the kids had their hands on their hips too. No they weren't....seriously? I scratched my nose-so did the choir. I made a squinchy face....so did they. It was like some bad sitcom, but sort of funny all the same. Shut your eyes and picture it-it really was comical. The actual performance is Sunday night so I have a couple more days to drill everything into my Swiss cheese brain and plug up the holes. In case that doesn't work, maybe I should come up with a back up plan. I can see it now-we'll be the first ever Christmas pageant featuring the Macarena and the Electric Slide. Fake it until you make it-words to live by...ha!

When Relief Isn't Necessarily a Good Thing

noreply@blogger.com (NarcoGirl) — Sun, 20 Nov 2011 21:37:00 +0000

You know when you go through those times where there's so much on your plate you seem to just be running on adrenaline? I guess its a good thing to have that sort of mechanism to get one through stressful times, but once the stressor is gone what happens? For me, I crash and crash hard. After Wednesday night's Thanksgiving performance a whole lot of stress was lifted, and Thursday I crashed. I was like the walking dead. The Nuvigil made no difference whatsoever. I would have given a smallish body part (like maybe the tip of a finger or something) to have been able to go home and sleep the day away. You know what I'm talking about-one minute you're okay and the next minute you're staring at your computer screen completely zoned out, with no memory of what you heard or read just moments before. Its times like that when the desire to sleep, and the effort to fight it becomes almost physically painful. Still I tried to maintain productivity, knowing that I still had one more big performance to make it through-and I was determined to nail it. My trio girls and I had the very cool opportunity to rock out to "Count Your Blessings" ala The Martins with our entire church choir singing backup for us. Cooler still was that we were able to sing it with a live band, complete with trumpet and electric guitar, which is just so much better than a standard performance track. We nailed it and it was awesome. Afterward, I crashed even further. I knew things were going seriously downhill as I tried to wake up Sunday morning and realized I couldn't move. I don't experience sleep paralysis often, but that morning it turned out to be particularly troublesome. For some unknown reason, The Hubby woke up with the notion to tickle my ribs, which wasn't how I wanted to wake up. I wanted to tell him to leave me alone and let me sleep but I couldn't speak or move. Of course I knew exactly what was going on, but it didn't alleviate the frustration of the situation.

Monday found me exhausted, but happy to have made it through the stress of the last two weeks' performance schedule. Unfortunately, exhaustion plays hell on the immune system and I started noticing the tell tale signs of my immune system bailing on me. The generalized feeling of crappiness ramped up Monday and Tuesday. At the moment my sinuses are throbbing and tender-my head feels like its about to split open. I'm bouncing back and forth between being completely stuffed up and flowing like a snot river (yummy, huh?). I'm really hoping I"ll be able to catch a nap or 3 tomorrow at The Hubby's grandma's house where we're spending Thanksgiving. Thankfully there are no choir practices for me and my boys, and no guitar lesson this week. I have no plans to venture out for Black Friday deals, and have nothing solid on my calendar until Saturday. I hope I can somehow recharge my battery sufficiently by then. It definitely helps that Thanksgiving dinner is somewhere other than my house, and I don't have to do any cooking whatsoever. These are just a couple items on the list of things I'm truly thankful for!!!!

Happy Thanksgiving everyone!!! Eat too much and fall asleep on the couch....its the one time of the year when nobody questions the need to crash in front of the TV!!!

Its Not Always About Me

noreply@blogger.com (NarcoGirl) — Sat, 12 Nov 2011 05:14:00 +0000

It always seems like the nights I really need to be sleeping are the nights I find myself sitting wide awake at 1am. Tonight is one of these nights. I need to be awake at the butt crack of dawn (only a few hours away at this point) so I can get the rest of my crew up and out the door by 7:30-ish. We need to meet the rest of the RA's at the church by 8:00, load up the van and head off to an all day Royal Ambassador event at a college campus two hours away. I have no idea what to expect as this is the boys' first year in RA's. At the very least it should be a loud and hectic day-there are three, count 'em, three sets of twin boys attending, the oldest set no older than 7 or 8. Thankfully we have a great bunch of involved parents, and each set of twins has at least one if not both parents going along as chaperones. This is a huge relief to me because believe me, I know how completely draining just one set of twin boys can be, and I can't imagine having to chase after three sets without backup. As long as we can keep track of all the ankle biters and nobody gets anything stuck is his nose, ears or any other orifice we should have an awesome time. What a long day tomorrow will be.

After this all day event I have practice with the rest of the trio I sing with-we're slated for three separate performances over the next 8 days. I'd be lying if I said the stress wasn't weighing on me. Narcolepsy doesn't like stress (neither does Lupus). All the things I have to do and remember keep rolling around in my head and I'm really trying hard not to forget something. Besides all the singing stuff coming up I need to carve out time to practice choreography for the Christmas musical with the boys and practice my electric guitar. Good thing I'm awesome at multi tasking and time management (and oh so modest too).

Honestly my busy schedule doesn't bother me all that much-its pretty much the norm around here. Managing my schedule and my health issues make it pretty easy to get self absorbed-especially because until recently I was the only one in my little family with any health problems. All the medical bills, appointments and medications were mine so I only really ever worried about managing these things for myself. Until now, that is. Getting The Hubby to go to the doctor is next to impossible. He could have an arm hanging on by a thread and still forgo the doc if there were a roll of duct tape handy. After years of listening to me nag him about it, he finally went to the doc to get some things checked out. Turns out that he has some very serious health problems. I won't go into detail as he is extremely private about his business, but I've been really worried about him. He tells me he's fine but I know better. He tells me he's taking all this seriously, but that remains to be seen. Truth is he doesn't like to talk about it and tends to keep his concerns to himself-which makes him the yin to yang as I'm anything but reserved about such things. That's actually a big part of the reason I'm still awake. I'm seriously concerned that if he doesn't take things seriously I'm going to end up a widow long before I should. His medical concerns will require regular specialist visits and daily management which I know he is less than excited about. I can't imagine what life would be like without him. There's no one else like him and if I lose him there's no one that could fill his shoes, in my eyes or our boys. I wonder if this is how he feels about my health problems. Its one thing to deal with your own health issues, but its a completely different kind of difficult to watch someone you love deal with health issues. I feel really powerless. I'm starting to realize that one of the best things I can do for my family is to take care of myself. They need me-more precisely, we need each other. Sometimes God puts you in situations that really make you see things from a whole new perspective.

Updates-Past and Present

noreply@blogger.com (NarcoGirl) — Sun, 06 Nov 2011 14:33:00 +0000

The end of the year curse is upon me once again. Every year without fail October through December are crazy busy and tend to leave nothing but a vapor trail. This year is no different. I've got some new business and more than a few updates. Let's start with the updates.....

#1-Update to There's An App For That-There was a comment left in response to that post that tipped me off to the Evernote app. Its SO much better than the Out of Milk app as far as organization. You can upload pictures, handwritten notes, even web pages. I convinced The Hubby to download it on his phone so now if there's something I need him to pick up I just add it to Evernote and it instantly syncs with his phone. The other week I wanted a modified chicken sandwich and wanted to know if The Hubby would pick it up for me. Instead of creating a long confusing text I just circled what a wanted on the restaurant menu I had at my desk (noting a few modifications), took a picture with my phone and uploaded it to Evernote. It was awesome. I've also been able to upload short video messages (but the operative word here is short). If you're into mobile organization I highly recommend checking it out.

#2-I wrote a post not too long ago about the Five Love Languages by Gary Chapman. After that post I got an email from a lady letting me know about an article called The Five Love Languages defined. I checked it out and its actually quite a good article that breaks down each of the Five Love Languages in the space of one page. Never mind the fact that the article is part of topdatingsites.com. I read the article-its right on and worth a look see.

#3-Savella update-I've had quite a few questions regarding Savella. Does it work? If so, how well? I can only speak for myself and my own experience with it. Anyone who has tried to research Savella reviews knows that the reviews don't help. Some people love it, some people think its worthless. For me, as far as pain relief, I can't say that the Savella helps me very much in that regard. I will say that it helps my mood significantly. I had a serious issue with moodiness when I was first diagnosed with narcolepsy and the fibromyalgia thing didn't do much to help it. Savella has really helped regulate things mood wise for me (which is the gift that just keeps on giving). This is why I decided to continue taking it. To be fair though, I don't always know what's causing me pain. I have joint pain issues due to my Lupus, and I don't think the Savella would do much to help that. I honestly can't tell you how well (or if at all) Savella will work for you-if I could I would. Unfortunately, you just won't know until you try it. All I can say is good luck-and help out others by taking the time to add feedback on your Savella experience if you do decide to try it.

Here lately I've been having some issues with forgetfulness which has been super inconvenient. Things like having my keys one second and having no idea where I set them down five minutes later. Then I'd find my keys only to find out I'd then misplaced something I'd set down while trying to find my keys. Its been a lot like channeling the Three Stooges. The worst was when I completely narc'd out the flu shot appointment I'd made for my boys and had to reschedule it. In addition, our church's childrens' choir Christmas pageant/musical is just five weeks away. I have five weeks to learn all the moves since it'll be my job to stand in front of the stage and do said moves for the kids who can't remember what to do. Next weekend I have chaperone duty for an all day RA trip with my boys and final rehearsals for three different singing engagements taking place in the next two weeks. Oh, and did I mention that I've started taking electric guitar lessons? The Hubby brought home a really cool Fender Stratocaster for my 36th birthday about two weeks ago-my kids think I'm super cool now. It doesn't take much to impress a couple six year olds.

I finally decided that I needed to get serious about taking off the weight I'd gained back during those super anemic months when I didn't have the energy to do anything. So far I've dropped about 14 pounds of it. Another 20 or 25 lbs and I'll be pretty happy. The trick for me though is keeping it off. I think I've figured out the losing it part, but the keeping it off gets me every time...lol. I'll keep you posted.

Narcolepsy With Sudden Onset Diarrhea of The Mouth

noreply@blogger.com (NarcoGirl) — Sun, 16 Oct 2011 20:06:00 +0000

One thing that has held true for me throughout this whole narcolepsy extravaganza is the fact that a bad narco day for me has the ability to completely turn off my internal filter. Its the ugly truth. When those really bad days show up (like today) I've learned its safest to white knuckle it through and keep my mouth shut, lest some innocent bystander be burned by whatever caustic tirade my exhausted brain would otherwise stop at the gate. Even now I can feel it, bubbling just below the surface. I've been battling a nasty case of bronchitis that I let go for too long (didn't know I had it actually-just knew I felt crappy). I've been pretty tired and weak though the antibiotics are starting to win out now. Then last night, as usual, one of my boys came a-callin' around 3am to try to sneak into my bed, only to find that his brother was quicker on the draw. Why they both feel the need to wake me up to point this out is beyond me. Last night though, when he woke me up, I stayed up. You know how it is-you want to sleep and know you should sleep, but it just ain't happening. Knowing that I was up for the duration, I grabbed my audio book and ear buds and went to work cleaning my house. By the time 6:30am rolled around, I had done several loads of laundry, scrubbed the kitchen (including sweeping and mopping), cleaned the living room and dining room, and scrubbed a bathroom. I was beat and ragged but at least I had something to show for it. Everything looked awesome. Then my family woke up.

I don't know about any of you other moms out there, narcoleptic or not, but my boys seem to think I'm the only adult here that can handle whatever it is they happen to be needing at any given time. Its the damnedest thing I've ever seen. They will literally crawl over The Hubby to get to me only to ask me to do something that he could have easily taken care of. I can't even count the number of times that I've been deeply involved in some project or had my hands completely full and had one of the boys walk past their Daddy (who is usually sitting on the couch watching TV) to come ask me to do something I couldn't have possibly been able to do at that moment. It drives me nuts and stresses me out. Usually I end up shooting him some sort of exasperated glare and spitting out some variant of "can I get a little help here?". Usually my delivery is less than tactful, and usually it doesn't go over well. The thing is, when I'm as tired as I am right now I don't have the energy to keep my mouth shut. Seems counter intuitive, doesn't it? For me, it takes a lot of darn energy to dam up a rant borne of exhaustion. Its so much easier to just let it fly and hope for the least amount of collateral damage. Inevitably though, the bad day passes and there I sit-red faced and ashamed of my over the top tantrums...a narcoleptic morning after for me.

I'll give you a rare look into what one of my episodes looks like. The Hubby left to go hunting a few hours ago. I'm exhausted to the point of wearing this perpetual squinty face that leaves that crease in between your eyebrows. I missed the message at church because I was too busy with two little boys who completely lost their minds and manners. This left both me and The Hubby extremely frazzled by the time church ended, and I'm even more on edge when he is. We got home, The Hubby was nice enough to make lunch. However, all the work I did on the kitchen is completely destroyed. He left everything-two full sinkfuls of dishes, food left on the stove needing to be put up, tomato sauce splatters all over the back of stove, and and overflowing garbage can. And he walked right by a big pile of boxes that needed to be taken outside to the garbage can-and he was on his way outside!!!! Grab a box or two on your way why dontcha!!!!! So he gets to leave and ditch all this stress and I get to clean up after everyone as usual and play referee for the rest of the afternoon-and I'm so SO not up for it. My fuse is about an inch long and I have no slack to cut anyone today. I'm glad he's out hunting because I know my narco mouth would get me in trouble today. I know how this must sound-believe me, I know. I also know that I'll come back tomorrow after I've had some sleep, read this and wonder what the hell I was thinking posting when I'm this tired. Its sort of like that Paul Harvey program, The Rest of The Story. I've just told you part of the story. The Rest of The Story you don't know is that The Hubby did ask if I wanted him to come home early (I said no and that he needed a break, which is true). This is the first time he's been hunting since the season started September 1st because he's sacrificed his hunting time to do things that I've needed him to do. Unfortunately though, exhaustion makes it really easy to be sucked into a pit of self pity and blame. At least for me it does. So my master plan is to placate the kiddos with a nice long movie that we can snuggle up for-they'll be watching and I"ll be napping. Its usually a pretty good plan. I just don't have the energy to be any more creative than that right now.

Merit Badges and Momma Bears

noreply@blogger.com (NarcoGirl) — Wed, 05 Oct 2011 02:20:00 +0000

Sometimes I wonder if all the energy I spend trying to take care of things is worth it. Will anybody notice? Does it matter at all? Tonight I got my answer. Things have been so busy here I can barely keep everything straight. I've been relying heavily on my calenders and agendas to make sure I don't drop the ball somewhere. Making things really interesting is the fact that The Hubby is gone all week again on business. And what a week to be gone-parent/teacher conferences with the boys' teachers, children's choir practice, Royal Ambassadors, walk your kid to school day and of course tons of first grade homework and reading. So tonight at conferences I found out that both the boys are reading well above their grade level and are excelling in general. Each of their teachers asked them questions about what they think their strengths and weaknesses are, and what they think we as parents can help them with at home. Written on RJ's (younger twin-let's call him RJ) paper was something he apparently told her when she was asking him these questions. It was just one sentence, but it meant the world to me. When his teacher asked him what he would like us to work on more at home, he told her, "They help me all the time actually".

I felt like high fiving someone. Oh yeah-score one for the home team!!!! If there were a merit badge for narcoleptics I felt like I'd finally earned it. And you know how kids are-they tell it like it is (not always a good thing of course). Yes, I'm exhausted most of the time. Yes, my house looks like a tornado blew threw it almost 100% of the time. The important thing is that my boys know we're there for them, and they're worthy of our time. It sounds stupid said out loud, but sadly there are a lot of kids who don't feel that way. In other news, I somehow ended up being a chaperone for my sons' 1st grade field trip last Friday. We went to a local gymnastics place as they are studying balance and motion. Then it was off to learn about community helpers...at Walmart!!! That sounds so redneck-y, doesn't it? A field trip to Walmart?? Seriously? With 3 full classes of 1st graders!!! I had a group of 4 six year old boys, two of which were mine. Talk about pressing the ol' narco buttons! They ran me ragged on our scavenger hunt for community helpers at Walmart-but it was so worth it. RJ and DJ couldn't have been more excited about having good old Mom as a chaperone. You see, I'll need these sweet memories to comfort myself in a few years when they decide I'm an idiot and make me drop them off 2 blocks away from the school.

God has really blessed my family beyond anything I could have ever hoped for. The power of prayer is truly amazing-which is why I'm putting out a prayer request for RJ. It seems there are a couple nine year old girls on his bus after school who are being pretty mean to him-telling him he's stupid and making fun of him because he likes to sing. (huh?!) He's six for crying out loud! What on earth would possess a couple nine year old girls to pick on a six year old kid? I'm trying to decide what the best way is to handle this without making things worse for him. The momma bear in me wants to find out who the parents of these kids are and go marching over to have a word. I realize this may not be the best of ideas so I'm praying on the best way to handle the situation. You couldn't pay me enough to go through those years again. Prayers for us would be greatly appreciated.

Speak The Language

noreply@blogger.com (NarcoGirl) — Fri, 23 Sep 2011 14:33:00 +0000

So if I'm doing what I'm supposed to be doing, why do I still feel so crappy about it? It's like I just can't win. It's really all about that age old narcoleptic problem of limited energy,deciding what to spend it on, and dealing with the guilt of everything that ends up falling by the wayside. On the upside, I know I'm spending my energy on the right things. The Hubby and I spend most of our free time after work doing math homework and reading with the kiddos. It honestly takes both of us to get all their assignments done with enough time left for baths and bed time rituals. I have no doubt this is the best way to spend my time-especially growing up the way I did. My parents were largely hands-off and I spent most of my growing up years lonely and insecure. Situations like that pretty much never bode well-I speak from experience unfortunately. I want to make sure my boys know without a doubt that I have time for them and I want my actions to back that up. With that being said, by the time everything is done and the boys are all securely tucked in bed, I'm wiped out. If I had a maid I probably wouldn't feel the need to write about this. I can't seem to get over the guilt of not having enough energy to keep up with my house. There. I said it.

It sounds pretty dumb when I say it out loud. Of all the things to worry about am I really going to stress out about the state of my kitchen? Yes, yes I am. I can't help it. My mom was so extremely type A that when she started cleaning the house my sister and I automatically knew it was time to retreat to our bedrooms and stay there, lest we leave a water spot on the sink or something and bring down mom's wrath on ourselves. Mom deep cleaned on a regular basis-that's the only "right" way (that's what we were taught anyway). Some of my earliest narco memories are of the countless times I'd go to clean my room. I'd pile everything on the bed so I could wipe down every surface possible and end up having to clear a tiny spot where I could curl up and pass out for awhile. I'd wake up later and continue on. I didn't think it was strange or anything at the time. Its just the way things were so I never questioned the normality of it-I just knew I'd need a nap in the middle of my cleaning sprees. My mom spent so much time cleaning that she had no time or desire to spend any time with my sister and me. Thank God I had my sister to keep me company-I would have been seriously alone if I were an only child! I only bring all this up to illustrate how I know I'm doing the right thing by spending my time on the kids instead of the housework. Of my childhood, I remember that we always had a ridiculously clean house. I don't remember spending any quality time with my mom-no time spent showing me how to cook, or sew, or helping me with homework, or pointing out the good things I did-only where I was lacking. Fast forward to today and I guess you could say I'm pretty neurotic about housecleaning. I've been really working on coming to terms with the fact that I can't possibly do it all to the specifications that I want things done. It drives The Hubby insane when he spends a bunch of time cleaning and all I see are the things that didn't get done. Hell, it drives me crazy too! Sometimes I wonder if all my health problems aren't God's way of forcing me to slow down and consider what's really important in life. He works that way sometimes.

I read (or listened to, as it were) two fantastic books recently-The Five Love Languages, and The Five Love Languages of Children. Now I'm not the girl who's gonna point you to a book if its going to take you five years to get through it or bore you to death. I think most 'self-help' books are nothing but gimmicks dreamed up by someone trying to make a buck, but these two books, (by Dr. Gary Chapman) are right on the money. If you get a chance, take a look at them. Here's the summary:

With more than 30 years of experience as a marriage counselor, Dr. Gary Chapman has heard it all. He has helped couples at every stage of marriage and at pivotal points in their relationships—from those just discovering the joys and trial of marriage to those who are ready to call it quits.

After many years of counseling, Dr. Chapman noticed a pattern: everyone he had ever counseled had a “love language,” a primary way of expressing and interpreting love. He also discovered that, for whatever reason, people are usually drawn to those who speak a different love language than their own.

Of the countless ways we can show love to one another, five key categories, or five love languages, proved to be universal and comprehensive—everyone has a love language, and we all identify primarily with one of the five love languages: Words of Affirmation, Quality Time, Receiving Gifts, Acts of Service, and Physical Touch.

Since The 5 Love Languages^® debuted in 1992, over five million copies have been sold, making The 5 Love Languages^® a perennial New York Times bestseller. But numbers don’t measure the influence the book has had on couples and their marriages.

The 5 Love Languages^® has helped countless couples identify practical and powerful ways to express love, simply by using the appropriate love language. Many husbands and wives who had spent years struggling through marriages they thought were loveless discovered one or both spouses had long been showing love through messages that weren’t getting through. By recognizing their different love languages, they witnessed the rebirth of the love they thought had been gone for good.

The book has been translated into more than 40 languages and is healing marriages around the world!

I'm a born skeptic, but I have to say this stuff has been working. And what does this have to do with narcolepsy, or Lupus, or any of the other pain in the butt conditions I normally write about? Quite a bit actually. After I read (listened) to the audio books I was able to figure out the primary love languages of The Hubby and my boys. Just changing the way I ask them to do things has made a huge difference-now things actually get done. Interestingly enough, I discovered my boys, though twins, have different primary love languages. The point is now I know how to bend them to my will (lol-its not as sinister as it sounds). I know that for one of my sons, his primary love language is 'words of affirmation'. I would get so frustrated when I'd ask him to do something ten times before he'd get it done. I'd keep on him and threaten to take things away (or try to bribe him with the promise of other things) but none of that worked. Now I'm finding that if I just make sure to tell him what a great job he's doing when he does what I ask, that I only need to ask him once because he's so eager to please me and get those words of affirmation. I can't believe that such a simple concept is making such a big change in my house. Of course when I don't have to nag to get things done I'm much less stressed. Stress seems to trigger sleep attacks for me, so the less stress I have the better I feel. Things are calmer and everyone seems to be happier in general. My other son's primary love language seems to be a mix of physical touch and quality time. I'm finding that if I just take even 15 minutes when we get home to sit with him and snuggle or read, he's much more cool about giving me the time I need to do things I need to do without interrupting me every five minutes. Makes for a smoother flow and everyone gets what they need. I may still feel like a homemaking failure, but I'm guessing my boys won't care a thing about what the house looked like when they're all grown up. I feel like a much better mom these days. I've talked to a bunch of narco mom's who feel like their kids are being cheated by narcolepsy. I definitely recommend these books (or audio books). I downloaded them for free from my public library (rock on). I figured if the advice in these books can help smooth the rocky seas of my crazy family, with our hectic schedules and daily challenges, maybe some of you might find it helpful too. How does that saying go, work smarter not harder? I'm all for that.

There's An App For That

noreply@blogger.com (NarcoGirl) — Tue, 20 Sep 2011 17:46:00 +0000

I'm always on the lookout for new ways to streamline day to day operations here at Casa del Narcogirl. I must say that today I'm definitely doing the happy dance over my new favorite four letter word....apps. Yes its true, I've finally given in and upgraded to my first ever smart phone. Its not that I have anything against technology, it was always the additional cost factor that kept me from upgrading (paying full price for anything really hurts my feelings). As luck would have it, the stars all lined up when 1.) The Hubby and I realized we were both approaching the end of our contract with our cell provider, thus making us eligible for discounts 2.) I found a sweet buy one get one free offer on the Droid 3 and 3.) I discovered a special promotion offering anyone upgrading to a smart phone a $100 gift card for simply sending their old phone back to the company. All in all our monthly bill didn't go up after the upgrade and with the gift cards I think we might have actually made money on the deal. Rock on. Anywhoo, getting back to the point, I've discovered that some of the apps for Android can be pretty darn handy to your everyday narcoleptic person.

I never really paid any attention before, but there are like a gazillion apps for Android and many of them are free. I ended up finding an app by the name of 'Daily Bible', which is exactly as the name describes. The coolness factor of this app, in my opinion, comes from the fact that it will read the text to you. I just type in whatever section of text I'm looking for, i.e. Genesis 40:1-45:1, hit search, then play. The guy that narrates is actually pretty good, using enough inflection to keep me from zoning out. This has been awesome for me as I have a really really hard time staying focused and alert when reading big chunks of scripture-like when I'm prepping for Sunday school lessons and such. The only thing that would make it better would be a rewind button for those times that I do miss a bit here and there. The Daily Bible app lets you choose from seven different bible versions (including KJV and NIV), offers 8 reading plans, access to 8 devotional podcast programs (including Greg Laurie, Chuck Swindoll and Joel Osteen) and access to 8 text devotionals, including Charles Spurgeon's Morning and Evening (which, incidentally, was one of the first books The Hubby ever gave me.) I'll admit I still don't know everything this app can do but its awesome.

Listen up my fellow Type-A'ers, this next app is for you. At first glance I assumed "Out Of Milk" was just some shopping list maker app and passed it up several times before actually checking it out. I was bored enough one day to actually check it out and now I'm in love. That's all I can say. I'm a list maker and have several dogeared, crinkled, half sticky post it notes floating around at any given time. Yes, Out of Milk does let you compile a shopping list but that's not all. There are three categories, Shopping List, Pantry, and To-Do. First of all, there is a companion website you can use to input your information-much better than trying to use a Qwerty keyboard or touchscreen. You can also update your shopping list by scanning a product's bar code. Voila-the item description magically pops up on your list. You have the option of adding the item's cost and sales tax for your area-which is helpful if you're trying to keep to a budget. The pantry list is awesome because you can keep an inventory of things like what spices you have on hand. Many times I've been at the grocery store thinking about making something, but not remembering if I have this or that at the house. The To-Do list is self explanatory I think. The cool thing is you can create as many different lists as you want. I have a list I call "Keepers", which is a list of meals that everyone in my family loves and will eat. I tend to suffer from Narco brain and blank things out-especially when it comes to figuring out what to make for dinner. Now all I have to do is glance at my Keepers list and pick something. Whatever you update on the website automatically syncs with your phone (and vice versa) so there's no need to enter it twice. Plus you can share your lists with other people, which is going to come in pretty handy for me and The Hubby around Christmas shopping time, when we tend to divide and conquer. We'll be able to instantly update each other on our progress. The only suggestion I have is be careful when assigning a nickname to your website account. I found this app so handy that I decided to nickname it "My Personal Assistant". Unfortunately, only the first 13 letters are visible on the page, leaving me with a page name of "My Personal Ass..." I just left it-its funny in a 6th grade sort of way........

I'm still exploring, and will keep you updated if I stumble onto any more useful apps...

Domestic Survival

noreply@blogger.com (NarcoGirl) — Mon, 05 Sep 2011 01:40:00 +0000

I'm struggling. The last couple weeks have simply been about survival, and in light of recent medical revelations I was contending with more than I realized. The day before my last blog post, The Hubby left on his lengthiest business trip to date, leaving me and the boys to down the fort until he finally got back last Wednesday. It proved to be a really long two weeks.  After much consideration, I decided to continue taking my first nightly Xyrem dose while The Hubby was away. I knew that if I completely skipped it, I'd be a walking zombie and that just wouldn't be a good thing.  My boys very rarely wake up during the first half of the night so that first four hours turned out to be the best time for me medication wise. I also knew that in the event there was an emergency here there were several people nearby who were aware of our situation and could be called on for help.  The Hubby's leaving also happened to coincide with the boys' first day of first grade, so we had that transition to deal with along with homework and school activities.

The boys had a bit of a hard time with their daddy having to be gone for such a long time, and I tried to fill any downtime with fun distractions that wouldn't leave me drained. I scoured different craft and DIY websites looking for project ideas.  I found some awesome and inexpensive ideas at http://www.dollarstorecrafts.com/ that had my kids thinking I was the coolest mom ever. We made toothpick mounted rockets that launched from bendy straws and used some stray paving stones to build a small flower box around the base of our mailbox.  Walmart had petunias on sale for $2 a container and we filled our newly made flower box with the pink and purple flowers the boys picked out. I had planned a head a bit and had plenty of ideas for quick and easy weeknight dinners. For me that's a big part of the battle-I always draw a blank when it comes to figuring out what to make for dinner. I'm blessed to have an awesome church family who believes in bringing dinner to friends-which made the boys and me the grateful recipients of a lovely pan of chicken parmesan. As bad as I am at asking for and/or accepting help, it was nice to have my friends call and check up on me. The next weekend was the weekend that hurricane Irene passed by.  We were fortunate enough to have missed the worst of the storms, but we did end up with absolutely perfect kite flying wind. The boys did 90% of the running with the kites which worked great for me. Afterwards we went to see Cars 2 where I managed to almost stay awake for the entire movie. I didn't fall asleep per se, just lapsed into that zone between wakefulness and zonked out. You narcos know what I mean.

After a few days of delays The Hubby was finally able to head home-and not a moment too soon. I took the day off Wednesday so he and I could just hang out but that was the end of the fun and games. I noticed on Tuesday that my feet and ankles were horribly swollen. Given the host of problems I have, especially considering my Lupus, I made an appointment with my doc to make sure things were okay. They ran some labs and told me to call in a few days for the results. When I saw the doc's number pop up on my caller ID first thing the next morning I knew it probably wasn't good news-and it wasn't. While most of the tests came back okay, my hemoglobin level had dropped to an 8. The said I needed to go see a gastroenterologist that very day to make sure there was no internal bleeding responsible for such a dramatic drop in my Hgb level. I went that afternoon to a gastro doc where they just took more blood and ordered more tests. I asked if I could just take some iron and be done with it, but was told that my level was too low. Apparently the fact that I'm on coumadin is where the concern of internal bleeding comes in. So here I am, feeling like complete crap waiting for test results. At least the anemia explains the monster headaches and muscle aches I've been having lately. It explains why its been so very difficult and painful to workout (which has been a major contributing factor to the 15lbs I've gained since May).  A good friend of mine is an ER nurse and told me they start transfusing patients at an Hgb level of 7. This is not encouraging. I'm really ready to feel better but nobody has told me how to fix this yet.  All in all though, considering the anemia I was unknowingly dealing with, I think I did pretty well with everything while The Hubby was away-yay for me!

All of this just doesn't fit into my schedule..lol. I'm hoping this is something that can be taken care of quickly so I can get to taking this extra weight off. It would be nice to finally be rid of this perpetual headache too. The most twisted part of this is that I've been just telling myself that I need to push harder or that I'm just getting lazy when there's actually a physical reason for this malaise I've been feeling. (Besides the narcolepsy and Lupus of course). Why is it that we're so hard on ourselves? Do we really need permission to be sick? Yeah, its a head scratcher.

Learning Curve-Study Secrets for The Narcoleptic Student

noreply@blogger.com (NarcoGirl) — Sat, 20 Aug 2011 02:42:00 +0000

So here we are, another school year upon us. How is it that these months are flying by so fast? This time of year makes me remember my college years and how miserable it was trying to drag my exhausted butt through classes and homework. The diagnosis of narcolepsy was still a few years out for me back then and I attributed my extreme sleepiness to my horrible schedule. I was working a full time job during the day while alternating school and a part time job on the weeknights and weekends. Throw my Lupus in on top of all that and the mystery of my inability to stay awake didn't seem like such a mystery. Back then I survived on caffeine and the bottles of ephedrine pills I used to get at the gas stations around town before they were yanked off the shelves. Yeah, it wasn't pretty.

The roughest year for me was my last year, when things really started to get bad. I was nodding off in classes-even the ones I was really interested in. I'd sit down to read my text books only to discover that I couldn't recall a lick of what I'd read just minutes before. I was reading and re-reading things several times without retaining any of it, or even remembering that I'd read it. I lived by myself at the time so when I was studying the place was quiet-and that was pretty much the kiss of death right there. After all, it was quiet, I was tired and there was a bed right over there.... Most amazing of all is that I somehow managed to achieve and maintain my status as an honor student. My desire to keep that status drove me to come up with some study strategies that I could employ to break through the fog. I thought this would be a pretty good time to pass them along.

By far the most helpful thing I did was to buy a voice recorder. I took the reading assignments I had for each class and read them into the voice recorder. Then I'd pop in a set of ear buds and listen to what I'd read while doing things that kept me awake and alert-like washing dishes or running. I could learn news songs with little effort because the radio stations would play them over and over so I thought maybe listening to my homework over and over would sort of be the same thing. It really worked well for me, plus I was killing two birds with one stone by doing things like cleaning and exercising while "studying".

Another biggie for me were flashcards-I think I may still have my old chemistry flashcards to this day. Anyway, I used this method when I had a lot of facts to remember-like in my chemistry and political science classes. I put small chunks of information on each card and took them with me everywhere I went. I'd put a question, term, formula or acronym on the front of the card and the answer or solution on the back. This worked really well if I'd find myself with a few extra minutes here and there. It was also good because I could go through the card stack, pulling out the ones I needed to spend extra time on and setting aside the ones I had down pat. The cards really helped me to focus my energy on what specific things I needed work on without having to waste my precious energy going through every single thing. I still smile as I think back on the times The Hubby (who was The Boyfriend back then) would drill me with my flash cards-and one particular session of "extreme studying" which amounted to er, um...something like strip poker. (We were well into our 20's here people-college, not high school). I still remember smiling and blushing during the test as I recalled the answer to one of the questions and the reason why I remembered it so well. Ahh memories........

For the few misguided semesters I studied French, I found that it was very helpful to actually label objects with their French name. It may look a bit strange having labels on everything, but it helped me associate a thing with its French name. I'm all about getting the biggest possible payoff while expending as little energy as possible, especially since I really don't have that much energy to begin with. It also helped that I had a boyfriend (who is now The Hubby) who often took care of some of the grunt work, like typing up my papers for me so I could use that time to rest. This is even cooler given the fact that we had a long distance relationship for awhile. I would fax him my handwritten pages and he'd email or fax me back the proofed and typed up version. I truly believe that meeting him was God's way of saying that since I obviously can't distinguish between a bad guy and a good guy He'd just go ahead and run me into the best guy. Good thing Jesus loves me-seriously.

I'm sure there are more ideas that innovative narcos have come up with in the How To Survive School category, but these are just a few that I've used and have had success with. As they say, necessity is the mother of invention.......

Tell It To The Judge

noreply@blogger.com (NarcoGirl) — Fri, 12 Aug 2011 07:48:00 +0000

I've been trying to carve out time to get some updates posted but time hasn't been the easiest thing to come by these days. I've been trying to make mental notes as to the things I want to remember not to forget, but for me the notion of relying on mental notes is something that should probably be followed by a punch line of some sort. I do have an actual post-it note affixed to the lid of my netbook however. It may take the next few posts to update everything on my mind so bare with me. Alrighty then, here we go......

A few weeks ago, The Hubby surprised me by informing me I'd been selected for jury duty. I had just walked in the door from work and wondered how in the world he could possibly know that since he doesn't open my mail (not that I'd care if he did). One thing I never knew about a jury summons is that its marked as such in big bold letters on the envelope. I've obviously never been called to serve before. Along with the summons was a form for me to fill out and send back, which I did the very next day.

About a week and a half later I received another letter in the mail. It started off by explaining that I would be exempt from jury duty (yay!) per my request (huh?) due to the fact that I am over 65 years of age and have requested an exemption (okay, back the train up...).   For a split second I thought about just letting it go, but quickly dissmissed that notion, not wanting to find out the hard way that it could come back and bite me on the you know what. I called the clerk of courts, informed her of the apparent mix up and confirmed that I would indeed be reporting to the courthouse on the appropriate date.

Now most people see jury duty as an annoyance (which was evidenced by the gaggle of people from the jury pool who later lined up in an effort to convince the judge of a reason why they should be excused from service). I am not most people..lol. I was really excited about it, which probably had everything to do with my affinity for true crime shows and Law and Order marathons. I had to laugh at myself as my eagerness reminded me of the jury selection scene from the movie Devil's Advocate where Keanu Reeves boots a potential juror saying, "She's wrong. She wants on this jury."   Man I love movie quotes.

So the day came and I was off to satisfy my civic duty. I found the courtroom without much trouble and even ran into a friend of mine who just happens to be a deputy sherrif. As luck would have it, she was the law enforcement officer in the room for the jury qualification process, Glock and all. I was stupidly surprised that the courtroom setup looked nothing like it does on TV-I mean the witness box wasn't even attached to the judges bench, and the jury box was arranged vertically, like stadium seating instead of two horizontal rows. Also missing was the presence of any sort of shrewd, young Matthew McConaughey in A Time To Kill looking lawyer-but I digress. Moving along......

After some preliminary questioning of the jury pool (name, employer, spouse's employer etc) the judge came out and started explaining different exclusions, including medical exclusions. He explained that a valid medical exclusion would include any condition that would hinder one from carrying out the responsibility of being a juror. I suddenly wondered if being Narcoleptic might be a valid exemption. For one thing, a sudden bout of sleepiness may make it difficult to concentrate. Would I nodd off if there were a lull in the back and forth of the courtroom? Would sudden uncontrollable yawning be a problem? I momentarily and seriously wondered if it would be irresponsible on my part not to bring this to the judge's attention. Chances are that the minute I mentioned my narcolepsy the Judge would assume I'd be falling out in the jury box without warning and excuse me from service without another thought. But then I started thinking in the other direction.

Of course I can only speak from my own situation here, but as I reasoned it out I decided that there would be no actual valid reason why my narcolepsy would be that much of a problem. For starters, my narcolepsy is well controlled with medication-especially now that I've made the switch back to Nuvigil. Then I thought about my job. I verify insurance coverage for sleep studies for patients in four states (isn't it ironic, don't cha think?). It doens't sound like it would be too difficult until you take into account that each insuance company has a different set of rules and coverage conditions dependent on procedure and diagnosis codes, plan type and code, coverage group, prior authorization status (which I am responsible for obtaining 90% of the time from insurers who don't want to pay for testing 95% of the time), and of course network status. I am not exagerrating when I say there are literally hundreds of different plan types. I have no acceptable margin of error-each patient I work on needs to be 100% accurate. On a side note-it tends to really irritate me when anyone automatically assumes that a person with narcolepsy is less capable than a non narco person, or that we are mentally diminished somehow. We're not-we're just sleepy!   Granted, finding the right treatment or medication can be a long and frustrating process, but when reasonably controlled its completely possible for a narcoleptic person to do anything a quote unquote "normal" person can. My point here is that after considering the demands of my daily grind which I successfully pull off day after day, I knew without a doubt that narcolepsy would not render me incapable of fullfilling my responsibilities as a juror. So in the end, even though I have no doubt that I could have milked the narcolepsy angle for all it was worth and probably used it to bail out of jury duty, I didn't. I think to use the condition as a means to shirk my civic responsibility would have been a disservice to all the narcos out there fighting to educate the general population about what narcolepsy really is and what us narcos are truly capable of. That's just the view as I see it from where I'm sitting in the stands, of course.

As it turned out, all the cases on the docket for the week I was supposed to serve ended up settling out of court, meaning I was never actually called to serve. Still, I am grateful for the experience as it caused me to really consider what I'm able to accomplish everyday, despite the narcolepsy ball and chain. I know there will be ups and downs and bumps (and big sinkholes sometimes!) as I travel down the road of narcolepsy, but this stretch was nice and smooth....

I Want It All

noreply@blogger.com (NarcoGirl) — Fri, 22 Jul 2011 01:01:00 +0000

I can't believe its almost August already. School starts up in a month which means the reinstatement of hectic schedules for us all as we pile on homework, projects, field trips, fundraisers, etc. Wednesday night choir rehearsals start up again for me next week. Combined with my Tuesday night trio rehearsals, 2 of my 5 available weeknights are booked. I'd decided a couple weeks ago that I would resign from teaching Sunday school with the start of the new school year, but the decision just didn't set well so I re-enlisted for another year. It takes more work than you'd think to put together a lesson that will keep a bunch of 3rd and 4th graders awake and engaged. The new wrinkle this school year will be the periodic absences of The Hubby as he travels out of state now and again to build his new business. I was exhausted by the time he returned from his last four day trip, which makes me pretty darn nervous about the ten day trip coming up in the next couple weeks. I've had several offers of help from friends at church (my church family is awesome), but historically I really suck at actually taking people up on their offers. I always feel guilty about it, like I'm putting someone out despite the fact that the help was freely offered. What a head case I am sometimes.

What got me thinking so much about schedules is the fact that I haven't been able to find any time to do some of the things I've been really wanting to do, which made me stop and think about the reasons why. I've been dying to take some time to just sit down, break out my wire and beads and start whipping out some of the awesome jewelry design ideas that keep running through my head. I just can't seem to get to it. There's always something that needs to be done for either the kiddos or something that needs to be cleaned somewhere in the house or some errand that needs to be taken care of. Unfortunately, I just can't relax if the house is in a state of chaos-I have two rooms at this very moment that are good candidates for that show Hoarders (they're guest rooms so I'm not overly concerned, but still.) There are so many things I really want to get to but I just don't have the stamina to do it all-and its only going to get much worse in the coming weeks and months. I want enough hours and energy to do everything I want to do when I want to do it. That's not asking for too much, is it?

I've been able to come up with a couple of multi-tasking strategies that will hopefully streamline a few things, like reading to the kids while they finish up in the bathtub and treadmilling while they play their video games (the treadmill and the Wii are in the same room). I'm also going to rely pretty heavily on paper plates, cups and utensils while The Hubby is gone. This will mean less kitchen cleanup for those days when I know I just won't have the energy for it. The most stressful time of the day is when the kiddos and I first get home from work and school-I usually have my arms loaded down with things from the car, trying to stumble through the door while my boys warn me that they're starving to death and need a snack RIGHT NOW! I think I may try prepackaging snacks or making a 'snack box' that they can reach by themselves to get their own snacks without me having to worry about it. I've been trying to think of time/stress saving ideas during my more wakeful times when I'm feeling more on the ball and seem to have more brain power.

Starting tomorrow, I'll be switching back to Nuvigil and I'm hoping it will help reduce my level of frazzeledness too. I've made my feelings toward Adderall loud and clear in my posts and I'm so excited to finally be rid of it. At any rate, for the moment I feel like I'm just hanging out in the 'ready' position waiting for the starting gun to go off for another school year of running around like a bunch of headless chickens. It will be interesting to see how things play out......

Ignoring The Narcoleptic Elephant In The Condo

noreply@blogger.com (NarcoGirl) — Tue, 12 Jul 2011 08:17:00 +0000

Last week was the annual family vacation with my side of the family. My parents, sister, nephews and an aunt all flew in from Wisconsin to spend a glorious week of fun in the sun at an ocean side condo with a spectacular view (thanks Mom and Dad!).  This was the first vacation that hasn't been spent with either all my people camping out at my place or my family camping out at my sisters place in Wisconsin. We all actually traveled for this one-to beautiful Folly Beach.

The hardest part of preparing for vacation is, well, the preparing to leave part. Over the last couple weeks I'd made a concerted effort to keep a running 'do not forget' list of vacation essentials as they would pop into my mind. Between the four of us-me, The Hubby and the kiddos-there were lots of important things I couldn't forget to pack. We had to take care of getting our mail held for the week we were to be gone.  Then there was the big twelve passenger rental van that needed to be picked up from the rental place before we could pack up all our gear and make the couple hours drive to the beach to meet my family. All in all, I'd say I did a bang up job of remembering almost everything-including my ridiculously big straw beach hat I think I've only actually worn once since I bought it two years ago. I thought I was golden...until I went to take my nightly meds that first night. You'll never guess what I forgot.

Yep-I completely forgot to pack my Xyrem. I couldn't believe I'd been so careful in my packing list and still forgot something as important as my Xyrem. Upon realizing my mistake, I spent a good bit of time muttering a few four letter words under my breath. I knew that going without Xyrem would seriously change the landscape of my vacation, which it did. First off, there wasn't a single night that I was able to sleep through without waking up multiple times. This of course led to several unplanned afternoon naps-which caused me to miss out on several things with my family, as they all thought it best to just let me sleep. (More four letter oaths were uttered by yours truly). And when I did sleep, I was plagued by the most terrifying, vivid dreams I've ever had. I have no idea why the dreams were all so graphically horrible-maybe its the murder mystery audio books I've been listening to lately-but the stuff I was dreaming about was twenty times worse than any of my audio books. The dreams really left me rattled.

I spent as much time on the beach as I could, but too much sun triggers certain Lupus symptoms for me so I had to be careful not to overdo it. Spending hours in the hot Carolina sun and sand, then switching to the coolness of our air conditioned condo was like taking a horse tranquilizer. It seemed like the instant I got inside and cooled off I was in desperate need of passing out, which of course I did, as I told you not long ago. The whole thing was made a bit more weird by the fact that, aside from The Hubby, nobody on my side of the family has really treated my narcolepsy like its a real thing. Nobody asks questions. Nobody has suggestions.  Nobody comments when I mention how in need of a nap I am. I don't even recall any of them ever even saying the word narcolepsy-seriously. This may not sound strange, but remember I also have Lupus, which they all consider a real and serious condition. They all have suggestions and/or comments as to what I should or shouldn't be doing. They'll say something if they think I'm pushing too hard. Compared to the way my Lupus is regarded, it doesn't take a rocket scientist to figure out how serious anyone actually takes my narcolepsy.  This knowledge put me on edge all week, unfortunately, and I know I was a bit snippy when I shouldn't have been.

But besides ignoring the huge narcoleptic elephant in the room the trip was great. Now back to real life.....

For Parents/Families Of Narcoleptic Children

noreply@blogger.com (NarcoGirl) — Wed, 29 Jun 2011 05:49:00 +0000

Its been quite the learning experience living the last few years as an officially diagnosed narcoleptic chic in a decidedly non-narco friendly world. Fortunately I understand my daily challenges and have been able to come up with a few ways to make my day more manageable. Then I think about how it would be if someone without narcolepsy were put in charge of my treatment decisions, say like The Hubby. Yes, he loves me and wants the very best for me but he doesn't understand how it feels to be narcoleptic-how could he. I know he feels completely helpless at times and it frustrates him that he can't slay this dragon for me. Following that line of thinking, imagine finding out your child has narcolepsy and not having the first clue how to help them. Especially the little peanuts who may not yet have the vocabulary or ability to let you know what they need. Its not like there is an abundance of resources out there geared specifically for the parents/caretakers of narcoleptic kids. Luckily, we live in the age of the information super highway. With that being said, I'm going to take advantage of this Internet thing and introduce you to a Makky's Mom.

Her blog, Milestones, was started before her little girl was diagnosed with narcolepsy shortly after being hospitalized for pneumonia back in February. I want to say her daughter is kindergarten/first grade age. She is at the very beginning of the journey. With her permission, I'm going to share what she shared with me when I asked how this all came about....

I didn't actually suspect narcolepsy... but what we were seeing was that she had pneumonia in February (very bad - in hospital on IV antibiotics) - she never quite bounced back. 8 weeks later she was still very tired and napping every afternoon... then the cataplexy started and I didn't know what was happening except that my little girl was falling to the floor, unable to move or even speak every time she laughed. It didn't take me long to get her to the doctor. We were sent urgently to the nearest children's hospital. She was seen by a team of neurologists and they told us later that night (after CT scan was normal) that they suspected narcolepsy cataplexy. over the next 3-4 days MRI was normal, EEG ruled out seizures, nighttime sleep study was abnormal but not consistent with narc. Daytime sleep latency test was consistent with narcolepsy. We refused the lumbar puncture. The neurologist was satisfied that she had a typical case of narcolepsy with cataplexy. We started her on prozac about 3 weeks ago. Just increased the dose to a therapeutic level today (8mg) and now we wait to see if her cataplexy improved over the next 3-4 weeks. That's all they've told us to do for now. Maybe when she's older we'll start stimulants but for now I wouldn't want to do that....

Though her blog is primarily a financial blog, she does blog about her little one's narcolepsy and dealing with that from a parent's perspective. I've included a link to her blog Milestones above. You can read her post about learning of her daughter's narcolepsy diagnosis here. Then just go ahead and read the entire month of May 2011 posts. Its a great resource for families/friends of newly diagnosed narcoleptic children from someone who has been there and is there now. Support is a wonderful thing.

Do As I Say, Not As I Do

noreply@blogger.com (NarcoGirl) — Mon, 27 Jun 2011 20:25:00 +0000

So The Hubby left for his first out of state business trip over the weekend. Overall, things went much better than I thought they would. The boys and I spent Saturday with a friend of mine who has four boys herself. You'd think it would be chaos, but when my boys get with her boys they all seem to disappear-either upstairs to play some sort of electronic video game thing or outside to run around. Saturday they spent most of the day swimming. The best part of that being the degree to which the sun and the water drain the energy of my extremely active boys. It kind of makes me feel like I have a fighting chance. On our way to my friend's house, I planned to stop by my friendly neighborhood drug store and get my Adderall prescription filled. I was down to my last couple pills and couldn't afford to wait to fill the script later. I had called well in advance to my sleep doc's office for a refill, only to find out that he was on vacation for a week and wouldn't be available to sign any scripts. Add the couple days it took for the office to mail me the signed script once he did come back and that explains why I was down to my last few doses. Through the drive up I went, where the vacuum tube loudly sucked my prescription up through the pipe to the pharmacist. The crackling squawk box came to life. That is usually the point where some friendly pharmacy tech confirms my personal information and pickup time, but not this time. Instead, the tinny voice informed me that they were completely out of Adderall, and since its on back order they have no estimation of when they'll be getting more in.

Not good. Not good at all.

I started to panic. Was I going to have to check every drug store in town? What if I couldn't find anyplace that could fill the prescription? I was having a hard enough time staying awake already now that I had stopped taking my Xyrem for the duration of The Hubby's trip. I wouldn't have a prayer if I had to go cold turkey off my stimulants too. My mind was going a million miles an hour without making any progress. I stopped at a few other drugstores and was told the exact same thing-no Adderall and no idea when it would be available. I remembered that there was a Walgreen's very near to my friend's house. She lives about 40 minutes away from me in a less populated area. Maybe her Walgreen's would be able to help me out. I phoned Walgreen's as soon as I got to my friends house. After a few tense minutes on hold the Walgreen's lady told me that she had 100 tablets left (of which I needed 90) but she wouldn't be able to hold them without my prescription. I ditched the kiddos with my life saver of a friend and booked it down the road to Walgreen's. I was a woman on a mission. Thankfully, I was able to get my meds. Whew-that was too close.

Of course after calamity was averted, I calmed down some and realized what a hypocrite I must have sounded like to my boys. The Hubby and I really try to teach our sons whenever we can that God is in control. Instead of just staying calm and even and giving my anxiety over to God like I always tell them to do, there I was freaking out. Way to set a good example mom, I thought. I find myself in this situation more often than I'd like to admit. Its made me an expert of sorts in the field of apologies and explanations. Unfortunately, I'll be revisiting that apology and explanation field with my boys tonight when I get home as I apologize for the way I handled the events of this morning.

Long story short, it was a rough morning. I haven't been sleeping well the last couple of nights and this morning I was feeling it. I rolled out of bed late. Getting the boys to hustle up and get ready for school wasn't going too well either. Finally I hurried the boys out of the house, made sure the door was locked and slammed it hard behind me. That's when I realized my keys were still in the house. Again, I panicked. The friend that we had visited Saturday has a spare key to the house, but I couldn't reach her. I couldn't drive anywhere because my car keys are on the same key ring as my house keys. The neighbors weren't home (not that I know them or anything) and the single bar on my cell phone told me it was at death's doorstep. As ashamed as I am to admit it, I let a few four letter words fly (yup, fantastic role model I am). I try not to freak out over nothing, but when I'm very tired I find it really hard to keep things in perspective. Small problems look like huge catastrophic events. Being so exhausted makes everything seem worse and after the last few restless nights I am definitely exhausted. I frantically called The Hubby in Mississippi and laid out the situation. Thank God he's my complete opposite in these situations. I panic, he stays calm and talks me down. He was able to use the hotel wi-fi to get a local locksmith out to the house and before too long we were back in. All in all I was only 20 minutes late for work which really wasn't that bad. Things calmed down and again I realized how badly I had handled the whole situation. Clearly I need to work on practicing what I preach-and that's exactly what I plan on telling my kiddos when we get home. On the upside, its a good time to reiterate that though nobody is perfect, God loves us anyway. All we can do is ask for forgiveness and try to do better the next time.

The Hubby is on his way home as we speak and should be in late tonight. It will be a great surprise for the kids when they wake up in the morning. I just need to hold it together for a few more days until we leave for our beach vacation....and man do I need it! Just a few more days...

Ch-Ch-Ch-Changes

noreply@blogger.com (NarcoGirl) — Thu, 16 Jun 2011 01:02:00 +0000

Stress and Narcolepsy do not mix. Its not like we narcos don't already know this, but every now and again situations pop up that just serve as a reminder of this. My freak out happened Monday. The Hubby carries insurance on himself and our boys, and we knew that I'd have to add them all to my policy when his ended with his leaving his job. I figured that we'd have until the end of the month before that happened-I was sorely mistaken. I was already a nervous wreck as I watched the clock on his last day as I knew he was breaking the news to his guys. Then I got a text from the The Hubby letting me know that his coverage would be ending a bit sooner than we'd anticipated. Sooner as in the same day his employment ends, so does his insurance. This news was just about enough to send me into fits of hyperventilation. I immediately started in with a series of rapid fire emails to my human resources lady to find out exactly what documentation I needed to submit in order to transition my single policy to a family plan. So the HR lady emails me back and says I need to fax her copies of my boys' birth certificates and my marriage certificate to prove that they are really my children and spouse.

Oh crap. Where did I stash that stuff?!

I know I put it someplace safe-but where was that again? I knew I'd need those documents and I'd need to be able to find them again but for the life of me I was narc-ing out my own hiding place!!!! Are you kidding me with this? It was on the tip of my brain but just out of my reach. And the harder I thought about it the deeper the info burrowed away. Then to my surprise, I noticed that familiar tingly, weak feeling in my elbows and was glad I wasn't holding anything. That's where my cateplexy rears its ugly head-weakness in my knees and elbows. I haven't had any cateplexy problems to speak of since starting up with the Xyrem. I guess that just goes to show how far in the red my stress level actually was. I had to keep reminding myself that God is in control and my being anxious and worried changes absolutely nothing. I repeated that to myself like a mantra and it calmed my nerves. Fortunately, I was able to break through the narc wall and find the documents (sounds like I should be saying that like a government spy-now, give me the meeecrofilm....)

On the upside, the benefits of The Hubby's career move have already been apparent. Since he no longer has an hour and a half drive to work, he doesn't have to leave so darn early. This means that I don't have to get up so early. Now I can get up at my regular time, work out for 30 minutes or so and get in the shower without rushing-plus I can go to bed at the same time I do now and still get both Xyrem doses in. I had stopped working out in the mornings simply because I had to get up by 4:15am and skip my second Xyrem dose so I'd be cognizant enough to actually stand up straight. Another perk is that The Hubby has even taken the boys to their summer program the last two mornings in a row (which they loved!) He's been happier, I've been happier and our boys have been happier. God is good!

It will be interesting to see what other surprises the next few weeks will bring....stay tuned :-)

A Little Organization Goes A Long Way (I Hope)

noreply@blogger.com (NarcoGirl) — Sat, 11 Jun 2011 01:01:00 +0000

Breathe. Just Breathe.

Things here are changing in a major way. The Hubby has been working on starting his own company for awhile now, and finally God has decided that his time has come. Everything that The Hubby has been waiting on and working towards has fallen into place, making it possible for him to turn in his notice at work-which he did today. Next week will be his last at the place he's worked for for as long as we've been married.

I"m fighting the urge to start breathing into a paper bag.

Its not that I don't have faith in his abilities-he's one of the best in his field and more than capable of pulling this off. The fact of the matter is that I grew up without much stabilityl. As an adult, stability is very important to me. My knee jerk thought was, there are people out there who haven't been able to find a job in two years and he's gonna just up and quit a perfectly good one? Yeah, progress is not made by people like me. I've been reminding myself that God is in control, so just breathe and take it one step at a time.  There are so many potential areas to drop the ball-the most immediate being correctly navigating the paperwork and procedures involved in switching The Hubby and our boys to my health insurance in the allowed time frame. Working in the insurance field, I know the tricks, traps and fine print of the insurance game all too well.

There is another issue, and its a big one. The first couple months will require a handful of out of state business trips-and we're not talking day trips. The first one is a four day trip, but the next two are ten day excursions. That leaves me and our little boys here to hold down the fort. The thing that concerns me is that for the time he's away, I'll have to skip my nightly Xyrem doses. I can't be the only adult here and can't chance being comatose just in case the boys need me or something.   I didn't realize how big of a deal it was to skip a few days of Xyrem until The Hubby had to go on a five day trip just a few weeks ago. By the time he was supposed to come home I was completely useless and ended up sleeping the entire day. I completely crashed. I felt so bad for my poor kids. Five year old boys have tons of energy and I couldn't keep up with them-not by a long shot. How am I going to cope with the upcoming ten day jobs?

I must say The Hubby is all over this. He is just as concerned about my predicament as I am. While talking with his folks today he brought up my medication issue and made it completely clear that we need to have some sort of plan in place before the first trip. I was so relieved to have The Hubby step up and take the situation seriously. There was no sarcasm, no attitude and no feeling that I was creating a problem or burden. He presented the issue like it was simply another line item on the list of things we need to get in order in the next couple weeks. I feel so supported and its an awesome feeling. Yup, he's got my back.

So here's where I'm at. I need to figure out what I need to get through this. I know my mom-in-law said she'd spend a couple nights here with the boys and I, but I hate to ask her as she helps take care of The Hubby's ailing grandma. On the other hand, The Hubby thought she'd probably welcome the break.  I sure do appreciate her willingness to go so far out of her way to help us-maybe a night or two wouldn't put her out too much. In the meantime, I'm making a conscious effort to get both nightly doses in faithfully until the first road trip rolls around. I also thought I could pre-plan some meals, which would take some off of me. My bedroom is pretty big so I was thinking about putting up a fort in the corner for the boys to camp out in-that cuts down the chance of them wandering upstairs in the middle of the night and crawling in my bed (which wakes me up every time). Plus, they'll really dig camping out in their own fort.

I think with a little planning and teamwork we'll all get through this transition as smoothly as possible. Feel free to toss out ideas-I"m open to suggestion.

Narcoleptic Mommy Guilt

noreply@blogger.com (NarcoGirl) — Fri, 03 Jun 2011 04:59:00 +0000

I've always been quite thankful that my nacro blank outs to date have not been the cause of any serious problems. Well my friends, my lucky streak has come to an end-and in the worst possible way too. Here's what happened....

I came home from work Tuesday and happily explained to the older of my twins that I would be able to make it to his end of the year class slide show after all. I don't know who was more excited, me or him. We talked about it all night and looked forward to the slide show scheduled for today-the last day of school. I had made arrangements to take a couple hours of vacation time and was ready to go. I don't know why, but just as I was about to leave the house for my son's school this morning I decided to take a second glance at the date and time of said slide show. Somehow I had narc'd the date!!! The slide show I was so excited about was YESTERDAY! Oh no! I had marked it wrong on all my calendars! I was so disappointed, but I knew my son would be positively crushed. After all, upon learning that I'd weaseled out a way to make it to his class he'd declared me The Best Mom In The Whole World Ever. I felt like such a schmuck. I shot off an email to his teacher asking her to please explain the situation to him so he wouldn't think I forgot or blew it off. I stressed about it all day, praying that he wouldn't be scarred for life.

Never underestimate the resiliency of a kid.

The first thing I did upon picking up my kiddos was whole heartedly apologize to my older by a minute son and explain my mistake. I braced myself for the poked out lip and the sniffling tears. But when I glanced in the rear view mirror it wasn't a crumbling face I saw, but a slightly puzzled face. He cocked his head to the side and gave me a funny look-like it took him a second to figure out what exactly what I was talking about. A brief shadow crossed his face but it was gone as soon as it came so I'm guessing he wasn't as crushed as I'd thought he'd be. I didn't even lose my status as Best Mom In The Whole World Ever. Whew! I'm quite aware that before I know it I'll have been demoted to "Overprotective Mom Who Has No Clue and No Idea What She's Talking About". Fortunately, my son's teacher was kind enough to send home a disk of the slide show and we have a family date to screen it this weekend. I'm glad it all worked out, but I'm really bothered by my mistake. I've never made this type of scheduling mistake before and I find it very unsettling.

There's something else I find unsettling. Tonight we had some very severe storms pass through-severe enough that The Hubby and I let the boys hang out with us well past their bedtimes as we monitored the storm. The boys were asking about what we'd do if there was a tornado. I explained to them that it would be a lot like the tornado drills they have at school from time to time, and we talked about what we would do if we were at home in that situation. At this point, my younger by a minute son started telling me about the other sorts of drills they have at school-namely the one where they practice what to do if someone were to start shooting a gun in the school. I just stood there and listened as my 5 year old sweet faced baby boy told me they'd have to lock the classroom door, turn off the lights and lay quietly on the floor so the bad guys wouldn't know they were there. I pictured a classroom full of kindergartners laying on the floor of their dark classroom actually having to practice this and it hurt my heart. How times have changed since I was a kid. I would love nothing more than to be able to home school my kids but I know that for me, my narcolepsy will never allow me to effectively do this. It would be too tempting to let things slide when I had a narco attack, or really needed to nap (which is often). During my really sleepy times I have a hard time focusing, and of course there are the memory issues-not exactly the best resume for anyone in sole charge of a child's education. The stress in and of itself would be enough to ensure one doozy of a sleep spaz out. I give so much credit to teachers-they should really make a whole lot more money than they do. Just sayin'.

Anyway, the are lots of changes coming up in the very near future-all of which will definitely have an impact on managing life with narcolepsy. Should make for some interesting posts over the next several weeks. Stay tuned......

Dangerously Close To Escape Velocity

noreply@blogger.com (NarcoGirl) — Fri, 27 May 2011 01:23:00 +0000

I'm going on strike. I'm throwing up my hands and saying to hell with it. This is probably not a good thing. Not just because my stress level is nearing escape velocity, but because I'm starting to lose the will to reel it back in. I've been stressed before, but I've always fought back in the past. More and more lately I find myself wondering what the point is. Like I was saying, this is not a good thing.

I've been struggling with insomnia lately. You'd think this wouldn't be a problem in light of the fact that the Xyrem is supposed to knock me out. In a perfect world I'd have enough hours in the night to take both doses but 99% of the time this is not the case. On a good night I chug down dose no. 1 no later than 10pm. If I'm able to lay right down and go to sleep I can usually squeeze the second dose in about 1:00-1:30ish. Now I'm going to just be brutally honest for a minute. Most nights I may go to bed with all intentions of letting the Xyrem knock me out but instead find myself um, (how do I say this tactfully), fighting the medicine to pursue....uh, spontaneous extraciricular actiivities. Right or wrong I think spontenaety is important, and for all that I've had to give up for this God forsaken condition I refuse to pencil in The Hubby like another doctors appointment. As determined as that may sound, fighting Xyrem sucks. Some nights are better than others. Some nights I seriously question my whole thought process, especially when I find myself squinting through one half closed eye because it makes the room quit spinning. How brain dead is that? And yes-I have passed out at the most inopportune times more times than I'd like to admit to. I'm only talking about this because I'm so damn frustrated I can hardly stand it. Usually I deal rather well with all my medical bs but I think its important to say that the stress of it all can be unreal. And obviously I'm not handling it too well today.

The Hubby's work hours have changed so that he needs to leave the house a half hour earlier each morning. This in turn means I need to get up a half hour earlier so I can be out of the shower before its time for him to get up. He doesn't always get up in a timely manner so I have to plan ahead to make sure I'm dressed and ready for work before he leaves as I'm the only one here to get the boys up, fed and ready for school. This also means that my morning workouts have disappeared. I simply have not been able to wake up as early as I would need to in order to get a work out in and still be in and out of the shower in time. Needless to say I've put a couple pounds back on. Yup....add it to the stress pile. How come the resident narco is the one responsible for getting everyone else in the house up anyway? That's just wrong.

I found out yesterday that on top of the normal tuition that I had budgeted for the boys summer program, there's also an extra weekly activity fee. And it starts next week. And it ain't cheap. The only thing I could do was call my music teacher and cancel my music lessons to redirect the funds to the activity fees. This doesn't seem like a big thing, but it was one of the only things I had that was just mine, something just for myself. Its nobody's fault really, its just a little discouraging I guess.

Yes, I'm venting. I don't know what else to do to try to get rid of some of this stress. This is about the only outlet I have left. I know I should be dealing with this better, but I've been very very stressed over a few other things going on lately . The Hubby tells me he's getting ready to quit his job in a couple weeks to start his own business and this scares me to death. TO. DEATH. I have no idea what to expect and it scares me. I can't keep up with my house these days at all and its just a pig sty. And the days I do bust my butt and get things done it only takes about half a day for my boys to tear it up. Like I said before, what's the point. I'm getting tired of hearing myself complain as I"m sure everyone else is so I'm about to sign off. I guess the point of this post is just to show that its okay to have a shitty day. It'll get better, but today is not that day. I'm going to bed.