(Note: Lest the post title confuse anyone, this post is not about babies taking Xyrem and Ambien. The first part of the post is about babies. The second part is about Ambien and Xyrem.)
I took my car to the local dealership this afternoon to get an oil change and have them look at an intermittent problem I’ve been having with the radio display. I checked Facebook on my phone about an hour into the wait and saw a post from WOOD TV-8 that linked to an article with a headline of “Dead newborn in trash; mom charged”. This instantly got me sad, mad, and perplexed. I still struggle with the “Why?” questions and reading that story got me started asking them again. Why was our son born brain-dead and thus could not live, while this other infant was very probably born relatively healthy and would have lived had his mother loved him and cared for him properly. (Yes, I’m making some assumptions about this mother and her baby – assumptions that might not be correct.) It just doesn’t seem fair. We loved our son sooooo much and had a nice warm home for him with loving siblings…and we couldn’t keep him. And all across the country – the world, even – mothers give birth to babies that are unwanted, unloved, unimportant to any human beings that should care about them….and so many of them die as a result.
A few minutes after reading that article, a young woman entered the dealership waiting room carrying a baby in a car seat. She struck up a conversation about babies with another woman in the waiting room and at one point she said, “I like babies as long as they’re somebody elses, as long as I can give them back at the end of the day and not have to deal with the crying and fussing.” I’ve heard other people say that in the past, and thought I understood their point of view. My view has definitely changed. I would gladly “deal” with my son’s crying and fussing if I could just have him back. So many people seemingly take their children for granted, and don’t realize how easily and quickly they could lose them. Love your children, be grateful for them, thank the Lord for them, hug them, and tell them that you love them.
~~~
I spoke with my sleep doctor recently about my narcolepsy medication. I’ve been taking Xyrem for almost a year now. It works remarkably well for me, but it’s also extremely expensive – even with insurance. My copay for a one month supply is almost $400. Thankfully I can take the Xyrem only half as often as prescribed and it still works very well. That brings the monthly cost down to just under $200 – much better, but still very expensive. The way Xyrem works is that it affects how I sleep at night. It helps me get a better quality sleep than I do when I sleep un-medicated. I started wondering if a different type of sleeping medication might give me similar benefits for a much lower cost. I asked my sleep doctor about replacing Xyrem with Ambien to see if that would help me any. She was very sympathetic to my concerns with the Xyrem cost and said she was willing to prescribe Ambien for me to try. I tried it for about a week, and was disappointed that it did not help. Not only did it not help my daytime sleepiness, it also didn’t even seem to help me sleep at night. I’d sleep okay for about 3-4 hours after taking the Ambien, but then the rest of the night I’d wake up every 30-45 minutes. I sleep better than that when I don’t take any sleeping medication at all!!! I was really disappointed that it didn’t work, because a one-month supply only cost me around $15. I’d much prefer paying $15 a month than $200!! Xyrem is just ridiculously priced. The full retail price of a typical one-month prescription for me is over $1,900. Thankfully my insurance covers a good chunk of it, but there’s still a hefty co-pay for me to take care of. Sometimes I wonder if it's really worth as much as I pay for it.
Since I first started thinking about my childhood memories, or lack thereof, I've discovered that I do remember more than I initially thought. However the memories aren't all readily available in my mind. They come to me randomly throughout the days and weeks and leave just as quickly. So in an effort to document them so I don't forever forget them I'm going to start writing about them in my blog. Hopefully others will find them interesting and won't be bored to tears by them.
It is also worth noting that the memories I will be sharing are only as accurate as my memory is - meaning some of what I share might never have actually happened, or might have happened rather differently than how I am explaining it.
The first memory I will share is an "imagined" one. I am quite sure this actually happened, but parents and siblings have both told me they have no recollection of this ever happening, thus I must have dreamed or imagined it. We've discussed this many times over the years, and to this day I still can't help but wonder if they really do remember this happening but will never tell me because it's rather humorous for me to have this "fake" memory.
I think I was between the ages of 4 and 7 at the time. It happened when our parents were taking us kids out west to visit our grandparents (Mom's parents). They lived in Wyoming, I think it was, and so we flew out to an airport in a neighboring state (Utah? I think?) and our grandparents picked us up from the airport and drove us back to their place. I remember the car ride back seemed to take a rather long time. Anyway, Dad wasn't able to fly out with us. I think it was due to obligations at work. We flew out ahead of him and the plan was that he would follow on a later flight, probably the next day, and bring our dog, Ginger, with him. He did arrive safely at some point after we did, and I remember him telling us about a scare they had on the flight over. The pilot had been flying *way* too low in the dark nightime skies and narrowly avoided colliding with a radio tower, thanks to the flashing light on top of it. After hearing that, we were VERY thankful that Dad had arrived safely!!
So there it is. The first childhood memory on my blog. And it's something that apparently never even happened (the part about Dad's plane almost colliding with a radio tower). I remember it quite well however!
~~~
I'm still taking Xyrem every night for my narcolepsy. A single dose each night is enough to control my daytime sleepiness rather effectively. Taking the instructed two doses each night would be even better, but as expensive as Xyrem is I just can't bring myself to do that. I can stretch a one-month supply of Xyrem into two months when I only take one dose a night, and that makes the cost a little more bearable.
I'm still amazed at how well the Xyrem works. I haven't taken any of my stimulant drugs (Ritalin/methylphenidate) for over two months now. Two months!!! I used to be heavily dependent on them to just get through each day, and now I don't even need them! Xyrem truly is amazing!
~~~
I've been underweight for as long as I can remember - pretty much just skin and bones. I've generally disliked being underweight and would occassionally put some effort into gaining weight, but never had any success. I had more or less convinced myself that it was impossible for me to gain any weight, no matter what I did or tried. A couple of months ago my fiancee really encouraged me to try again and to put serious effort into it this time. She said to strive to eat more food at each meal, and eat more often between meals too. I started doing that and before long my weight started to creep up, ever so slowly. I started out around 121 pounds. After a few weeks of stuffing myself with food I reached my first target weight - 125 pounds. I was very happy! I kept working at it and got to 127 pounds - and then slacked off quite a bit in my efforts and hovered around 127-128 for several weeks. I recently started working at it a little more and my weight is slowly climbing again. My next target weight was 130 pounds, and I thought for sure I would see 130 on the scale this morning, but alas, I was just shy of the mark, weighing in at 129.5 pounds. I've been working on eating a lot today and am really hoping to see it pay off tomorrow morning when I weigh myself.
The downside to all of this is that since I've been eating a lot more my stomach presumably stretched itself out and it takes more food to fill me up now, and I get hungrier much more quickly and frequently than before as well. If I loved to eat food this wouldn't be a problem, but I don't love to eat food so being hungry so much is rather irritating. I know I shouldn't complain - thousands of people would love to have the problem I do - difficulty gaining weight.
Yesterday morning was no different in that regard - I was quite tired and doing a very poor job of staying on task at work. I had plans to meet a former colleague for lunch. It had been five to six years since we had last been in touch, so I didn't want to show up half-asleep and looking dazed. I decided I had better take some of my stimulants to ensure I would be awake enough for our lunch, so I took 10mg around 11:30. Thankfully it was enough to wake me up and our lunch went very well. We talked for quite some time, caught up on each other's personal and professional lives, and made plans to stay in touch. Late in the afternoon, after returning to work, I took another 10mg because I was getting very sleepy again and wanted to make sure I would be alert enough for the drive home. A few months ago when I was completely dependent on my stimulant meds, taking a single 10mg dose would have had absolutely no effect on me whatsoever. Apparently the long drug holiday from the stimulants lessened my body's resistance to them.
Last night I took a single dose of Xyrem. I was hoping to take both doses but it didn't work out. I had to get up at 6am to get ready for work, and I didn't make it to bed until about 10:45pm. I set my alarm for 2am to take the second dose, since that is the latest I can take it and still get up at 6am. I sort of woke up when the alarm went off, but immediately laid back down without taking my second dose, and next thing I knew it was 3:15am and way too late to take it. So from 3:15am until 5:30am I laid in bed, tossing and turning and getting very little sleep - maybe an hour at most during that time. Of course right around 5:30am I suddenly got really tired and could have slept for hours, except I had to get up for work at 6. And, I didn't really sleep all that well during the Xyrem phase either - I woke up several times during the first part of the night while drugged. As a result today I was extremely tired. I made it into work okay, but as soon as I got to work I started having a lot of trouble staying awake. I took 20mg of stimulants and after about half an hour wasn't noticing any difference at all so I took another 10mg. Finally about another half an hour later they finally started to kick in and I've been doing fairly well since then. I'm expecting I'll have to take some more shortly though.
I ordered my next shipment of Xyrem yesterday also. It's supposed to arrive tomorrow. I just can't get over how ridiculously expensive the stuff is!! My final copay (after insurance and the pharmacy's copay assistance program) is roughly $410. And that's for just a single month's supply of the medication. I've discovered that I can still get the benefits of the drug by taking it at a reduced dosage or just one time a night, so I can stretch the supply out for about two-and-a-half months. It's still crazy expensive though.
It began late in the day on the 3rd of July, and ended shortly before noon today, the 14th of July.
The experiment was to see how well I could function off of both of my narcolepsy medications - methylphenidate (aka Ritalin) and Xyrem. I had expected to make it only two or three days, but today was the 11th day. I took 10mg of methylphenidate shortly before noon today and other 10mg just a few minutes ago. That's a far cry from the 90-100mg I was taking daily not too long ago.
I'll post more details about how the last few days have been later on.
Adding to the uncertainty of all of this is the fact that I am starting to slip back into being depressed about life in general. I know depression can cause a person to feel tired and sleepy and fatigued, so I suppose there's even the possibility that the sleepiness I'm noticing now is from being depressed and not from my Xyrem-free/stimulant-free body. Who knows. I don't think I'm all that depressed yet, so I'm fairly certain it is the N/IH and not depression. Time will tell.
I didn't have any problems on the drive in to work. Since arriving at work I've been sleepy here and there, and a couple of times I've caught myself with my eyes closed, nearing the point of dozing off. So it would seem that with every passing day I'm getting closer and closer to the full-blown EDS symptoms of the past. I'm interested to see how the rest of this day goes.
Barack Obama / Jeremiah Wright
I have been aware of the recent controversy surrounding Barack Obama and his former pastor, Reverend Jeremiah Wright. I had not paid any attention to it until today. I had not watched any of the Jeremiah Wright videos or read any of his comments that were causing such an uproar. In other words, I had no idea what the controversy was about. I didn't watch Obama's speech about race the other day, nor did I read the transcript. The one thing I had done prior to today was read a few articles yesterday; articles that were about people's reactions to Obama's speech.
Today I pulled up a couple of articles that talked about Jeremiah Wright's comments, and watched a few video clips on YouTube. After that, I watched Obama's speech in its entirety. Finally, I read a few more articles about people's reactions to the speech.
1) I thought the speech was excellent.
2) I'm disgusted with the level of outrage at Wright's comments.
3) I'm disappointed at the way people have responded/are responding to Obama's speech. I don't have time to go into detail right now, but I'm particularly disappointed at the reactions of white Americans, or at least those that are being reported by the mainstream media. (FYI: I am a 27-year old white male.)
Iraq war; five-year anniversary
"Anniversary" is typically thought of as a positive word. Calling this an anniversary is technically correct, but it feels very wrong. This is not positive.
My oft-promised post about the Iraq war will have to wait a little longer. After getting myself up to speed on the Wright/Obama controversy, I've decided that I need to write about this first. I think I have a somewhat unique perspective on it, as a white male married to a woman of mixed descent. I don't know if anybody will read what I have to say, or even care what I have to say, but I feel compelled to write about it anyway.
Idiopathic hypersomnia/narcolepsy
I've been feeling very discouraged/depressed lately, because my idiopathic hypersomnia has been getting worse (or the meds have been helping less) and I've been wrestling with severe tiredness much more frequently. It's hard to stay positive when you're this tired all the time. Anyway, the past couple of days I've been trying to find positives about this. It hasn't been easy, but I think I've found a couple. More on this at a later time.
Fahrenheit 451
I've been reading Fahrenheit 451 the last few nights, a few pages at at time. I have to fight myself to put the book down and go to bed. I would have stayed up all night and read it in one sitting, had I been able to stay awake and not had to get up early for work the next day. It is an incredible book, and I highly recommend it. I'll probably be talking about it more in the coming days.
Tags: Barack Obama, depression, government, idiopathic hypersomnia, Iraq, Jeremiah Wright, narcolepsy, reading
More details later when I have more time.
How do you find the words to explain something when all your brain and body want to do is sleep?
Perhaps more importantly, how do you explain what it feels like to never, ever be fully awake?
How do you explain why it takes ten minutes to write a post so short that it should have only taken one minute?
I've accepted that I have narcolepsy (or idiopathic hypersomnia, whichever it may be); that's not the problem. The problem is that I think I can take my drugs every day and then live like nothing was wrong with me - which roughly translates into typically not getting enough sleep for a normal person, let alone a person with narcolepsy. I'll routinely go to bed at midnight or later - lately it's been later more often that not - then get up at 6 or 6:30 in the morning. I'm averaging probably around 5 or 5.5 hours of sleep per night. I really feel like it's been catching up to me lately.
I take two different medications to keep me awake enough to work, drive, etc. One is generic Ritalin; the other is essentially the same thing but in an extended release version. Since I started taking these particular medications my prescriptions have been to take 3 of each per day - spread throughout the day, not all at once. For quite some time I didn't take the full dose of both drugs each day. Many days I could get by on just 2 of each pill. Some days I would need 2 of one and 3 of the other. Fairly recently I got to where I had to take all 3 of each pill to make it through the day/evening. Very recently there have been days where I've had to exceed my dosage - 4 pills of one drug, 3 of the other - if not 4 of both.
I know that these medications are of the type that your body grows accustomed to over time, meaning that the effects of a particular dosage will diminish over time as your body gets used to it. I've known that for a long time, and it worries me when I allow myself to think about the long-term effects of that. I think it's possible that this effect might be partially responsible for the increased dosage I've had to take recently. But I don't believe it's fully responsible. The increase in dosage required seems a little too sudden for that to be the only explanation.
Then there's the aspect of the side-effects of these medications. More on that in later posts, but let's just say that feeling somewhat awake comes with a price. So taking a higher dosage of the drugs in one day also increases the negative side effects. Great fun.
So why do I keep running on too little sleep? Because I'm in denial about the fact that, even with my medications, I still need to adjust my living habits. Instead of being a responsible adult and taking myself to bed when I need to, I'll convince myself that it's okay to stay up for awhile longer - even if there's nothing important that I have to do. Some nights recently this has resulted in me attempting to use the computer when I'm minimally awake, wobbling in and out of sleep, and feeling like I've been drugged, only to wake up some time later slumped over the keyboard having accomplished absolutely nothing on the computer.
I like to think that I'm a mature adult, but inside I know I'm far from it. From matters like these, to other areas of my life where I am significantly lacking in responsibility, to the problems in my marriage, and so much more - I'm a poor excuse for a mature, responsible adult.
Admitting that you have a problem is half the battle, or so they say. Or is it 3/4 of the battle? I don't know. Whatever it is, it doesn't apply to me. I know what most of my problems are. That's the easy part for me. The hard part is actually motivating myself to follow through on changing what I need to change to resolve those problems.
I'm hoping that forcing myself to talk about some of these problems here, even if nobody but myself reads this, will help me in motivating myself to fix them. Life is too short to keep dealing with the same problems all the time.
Because my medications are considered controlled substances, they cannot be called into the pharmacy; they have to be written on a paper slip and then mailed to the pharmacy. I obtained the written prescriptions from my doctor's office, filled out the necessary forms for the Caremark pharmacy, and sent the prescriptions and order off to Caremark. After receiving the prescription slips from my doctor's office, I waited too long to send the order to Caremark. By the time I sent the order I was getting very close to running out of my existing supply. Caremark's website says that customers can expect to receive their order 10 to 14 days from the date Caremark receives the order. I sent the order via USPS Priority Mail on January 14, so they had to have received it on January 16.
Late in the afternoon of January 18, their website was still not showing my order in my account section. I called them to inquire about it. They were rather unhelpful, although they did offer to call my doctor's office to obtain the prescriptions over the phone - that effort quickly fizzled into thin air once they realized my medications are controlled substances. They had no answer to my question of why my order wasn't yet showing in their system if they had received it 2 days prior. Towards the end of the phone call I finally directly asked them, "How long does it take for an order to show up in your system once you receive it?" They answered that it sometimes takes a couple of days. Well that would have been nice to know 20 minutes ago when I first asked why my order wasn't showing up in your system!
When I filled out the prescription order form I selected the 2-day expedited shipping option, since I knew I would be running out of my current supply very quickly. I figured if 10 to 14 days was the normal delivery timeframe, then 2-day shipping would surely bring the timeframe down to 8 to 12 days, if not better. They eventually shipped my order on January 26 - 10 days after they received it. Since it was a weekend, the 2-day shipping actually resulted in a delivery date of January 29 - 13 days after they received my order. So much for trying to get the order quicker by paying extra for faster shipping.
Anyway, that brings me to the FedEx part of the story. The tracking page for the shipment showed that a signature would be required. It was scheduled to be delivered at my home on January 29. Unfortunately, nobody would be home to sign for the package. I would be at work, and my wife and son would both be at school. On the morning of the 28th, I noticed that the package was at a local Kentwood facility, just minutes away from where I work. I decided to call them and see if there was any way I could possibly just pick up my package from the FedEx facility. I wasn't really expecting this to be an option, but I was getting desperate and I decided it wouldn't hurt to at least ask.
I called their toll-free number, selected the appropriate options to get routed to a representative, and my call was answered after less than 1 minute on hold. (Pleasant surprise!) I briefly explained the situation regarding my package, that it required a signature for delivery, wasn't scheduled for delivery until the following day, but that it was waiting at a nearby facility.
"...so I was wondering if there's any way I could..."
The representative interrupted me with, "just pick up your package from the facility?"
"Well, yes!"
"I don't see why not. Let me check and see if the package is off the truck and available to be picked up."
Come to find out, the package wouldn't be available for pickup at all that day, but it would be the following day (the scheduled delivery date) if I wanted to pick it up then. I confirmed that I wanted to do that. She proceeded to put a note in the system instructing that the package was not to be put on a truck for delivery, but held at the facility for pickup. Then she asked for my phone number so they could contact me if there were any issues, confirmed the address of the local facility, and gave me their hours.
At this point I'm feeling very positive about FedEx. I was expecting my request to be denied. Instead, it was not only granted, but also anticipated, and processed in a prompt, smooth, friendly manner.
The following morning my cell phone rang as I was getting into my car to leave for work. It was an automated call from FedEx. "Is this [my name]?" "Yes." "You have a package waiting for you at [this facility]. You may pick it up anytime during normal business hours, which are 9am - 8pm. Please bring a government-issued picture ID with you."
Well, I certainly wasn't expecting that! That was a very helpful call! (Ok, so it wasn't all that helpful because I already knew all of that info, but I still thought it was a rather impressive feature. It would have been extremely helpful had I not already had all of the information about the shipment.)
I stopped by the FedEx facility later that afternoon to pick up my package. That also went very smoothly. The lady staffing the counter was very cheerful and friendly, and she retrieved my package within a minute or two.
This was quite a different experience then my previous FedEx experience with their SmartPost shipping option. This experience left me feeling very satisfied and impressed with FedEx' customer service and their willingness to allow customer's to intercept their packages at a FedEx facility. Huge kudos to FedEx for this one!
Tags: Caremark, customer service, FedEx, idiopathic hypersomnia, insurance, narcolepsy, prescriptions
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