Recommended Reading-NYT Article About Narcolepsy

If you've never visited Julie at her blog, Rem Runner, you really should.  No, seriously-like right now, go check it out...I'll wait until you get back, no worries.

She's posted a link to a great narcolepsy article in The New York Times dated March 5, 2012.  I'm going to repost it because the article is just that good in my opinion.  You can check it out here.

Explains things pretty simply without being overly dramatic, preachy or condescending wouldn't you say?

Nuvigil Discount Card-Free First Month and Refills as Low as $5

It hurts my feelings to pay full price for anything.

Seriously, if there's a deal to be had I can usually find it.  The deal I'm going to tell you about today is a sweet one, though it does have a few stipulations and limitations.  The makers of Nuvigil have come out with a new discount card that offers a free month of Nuvigil (up to 30 pills) and refills as low as $5 (up to a max savings of $50). There are some stipulations, like the discount card must be accompanied by a new Nuvigil prescription, and you must have insurance coverage for Nuvigil.  I've been on Nuvigil for a good long while, but my refills ran out and I had to get a new paper script from my sleep doc's office. I was able to get the promised free month's supply with my "new" prescription.  My insurance does not normally cover Nuvigil, but I seem to remember that last year I was able to get an authorization or an override for it because Provigil doesn't work for me (my insurance covers Provigil.).  It looks as though I'll have to do that again for this new year if I want to continue with the Nuvigil, but I don't mind a little putting forth a little extra effort if it'll save me a bunch of money in the end.  I noticed that the card doesn't expire until 12/31/13, so maybe this offer will continue through next year? 

So how does a sleepyhead get one of these discount cards?  Its super easy-just go the the Nuvigil website and click on the "try Nuvigil free" circle button on the top right of the page.  You'll be asked to enter your email address and zip code, then click the "download your free offer and co-pay card now" banner on the bottom of the pop up window.  That should bring up the printable pdf that shows an image of the discount card, as well as the offer details/conditions/limitations. Please look at the details to see if you qualify. Good luck!  I'm going to try to get a hold of my health insurance carrier today to see about getting my Nuvigil covered again for this year.  If I can get that roadblock cleared up I should be good to go for the $5 refills.  I don't know about you, but I can surely find a way to spend that extra $45 a month I'll hopefully be saving. 

Hope this helps!

A Change Could Do You Good

Its been about three weeks since The Hubby's family has moved in with us and to be honest, things haven't been as stressful as I thought they would be.  Well, not for me anyway.  Having extra help around the house has really been a Godsend, and I will definitely miss that help when its gone. I haven't had to worry with making dinner and I've had plenty of help keeping up with the house.  They're also picking up some of the bills which is a Godsend on its own as I have one outrageously crazy dentist bill that needs to be paid off by August.  Did I mention that my brother-in-law is a superb cook and his garlic pesto tortellini is to die for?  Seriously fantastic.

February seems to be the month for change.  The Hubby and I have decided to pull the boys out of the daycare/after school care that they've gone to for the last several years.  Lately we've really been noticing that the staff seems overwhelmed and there is definitely not enough manpower to properly supervise the children.  This became undeniable last week when they lost one of the boys.  The Hubby went to pick them up, and it took around five minutes to figure out where our kid was.  It doesn't seem like very long, but when your kid is nowhere to be found and nobody has any idea what happened to him, five minutes is an eternity.  He ended up being in another building with a different teacher, but nobody knew that.  For all they knew somebody could have snatched him up and taken off and we would have had no clue.  Thank God that wasn't the case.  We're moving the boys to the after school program at their school.  They'll be properly supervised, given healthy snacks, be with kids their own age, and their regular first grade teachers will be there to help them with whatever homework they have.  The Hubby and I both feel very much at peace with our decision to switch, and the boys are actually super excited about it.  Tomorrow is their last day at their current daycare.

In other news, God has really blessed The Hubby's business.  He's been looking for a building that he can use to open his fab shop and just this week he found an almost perfect building in the area he's been looking at and at a great price. It seems that the only thing left is paperwork and to set a closing date.  If all goes as expected, he'll be able to open up shop which will mean jobs for several people.  God has really been good to us and hopefully we can get this deal done and bless some other people as a result.   Stay tuned.

Now for the interesting narcolepsy stuff.  I had my four month follow up appointment today with my doc's nurse.  She is awesome.  When she asked how things have been going with the Xyrem, I actually fessed up and told her I've been skipping the second dose.  I explained that when I wake up for the second dose I've been having a big problem with binge eating.  I've seriously been like a machine.  I figure I'd rather not wake up for the second dose if it will avoid the late night binge sessions.  I was surprised when she told me that she just saw a patient who had the exact same complaint.  Then she looked at me and said that it isn't my fault,  its the medicine. How cool is that?  She didn't have to say that, but it made me feel better that she did.  Then she suggested something new.  She asked me to eat some sort of carbohydrate snack about an hour before bedtime.  She figures that this might combat any fluctuation of blood sugar that might be triggering the binging.  Then she said instead of skipping the second dose just cut it in half.  I made a comment about how much weight I've gained lately, contributing it to the late night food fests when she made another surprising observation.  She simply said-Savella.  I must have given her a confused look because she went on to say quite matter of factly that Savella will cause weight gain.  Before I could stop myself I let a few choice words  about my rheumatologist slip out.  She had pushed and pressured until I agreed to try the Savella, and one of her reasons for pushing it so hard was that it wouldn't cause weight gain.  If you're new to this blog you should know that I do not like or trust my rheumatologist.  Unfortunately she's the only rheumatologist covered by my insurance so I'm screwed.  I spilled all this to my sleep nurse and told her I'm not even sure if the Savella is even doing any good.  Now here's the cool part.  Nurse J suggested that I try to titrate off the Savella, which I'm completely down with.  To that end, she gave me four titration packs of Savella and instructions on weaning myself off of it.  I'm so ready to get off the stuff, especially if its an underlying cause of my weight gain.  Nurse J also showed me my weight chart and pointed out my weight gain seems to have started around the same time I started the Savella.  I never even thought about it.  She made me promise to email her in about two weeks to give her an update on how things are going.  I'm honestly hopeful that this will be a good thing.  I've been really trying to get my weight back down and have lost about 8 pounds since the first of the month.  Any help I can get with that is much appreciated.  I'm really curious to see if ditching the Savella will make any difference.  I don't thing I'll be sharing this with my rheumatologist just yet.

So I was getting ready to leave and I noticed a flyer on the wall about a narcolepsy research study.  I asked nurse J if it was something I might qualify for-of course I'm all for Narcolepsy research.  She said that anyone in the study would have to be off all meds for two weeks, which pretty much rules me out.  Just the thought of two unmedicated weeks fills me with terror.  I have way too much to do to be a narc'd out zombie-its just the way it is.  She said that's the main reason that many of her other narco patients also opt out.  Rock and a hard place.

Have You Hugged Your Narcoleptic Today?

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

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.

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

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....