7 replies to this topic

[Megssosleepy]

I originally started posting this is Treatment, till I realized I was rambling... So instead its here?

After my exam last night I met up with a friend had 1 tall local beer (yum) and part of a really good organic burger... (this place was amazing) It was to late to take my Xyrem so I took a couple of other things to help me sleep... I slept great! Didnt wake once... But... my alarm (slowly gets louder) was blasting to wake me, then I hit the snooze IDK how many times! and fell right to sleep each time! Very late this morning.
The drive to work was hard even with cold on my feet, but I happily ate an apple and that helped... 20mins in I got to Starbucks and got a pumpkin spice latte, scone, and breakfast artizen sandwich... Scarfed down all of it! To have an appetite is amazing! My jaw isnt clenching and my stomach feels happy... My head is more like my own, no racing thoughts ect ect...
BUT-I have nodded off at work already and Ive only been here 30mins. My eyes wont stay open, I feel like a 4 year old on new years eve trying to keep my eyes open for the ball to drop!

I wanted so badly to be able to do this to have my own unscattered brain, an apatite, and no jaw pain... Now I remember why I take these drugs I hate... and I kind of want to cry... It was so great eating... but the way I feel now is not me either, This post has taken me over an hour to complete. My eyes are kind of distorting like I feel like I am partly in a dream...
Why Why Why Why, must I take drugs that I hate and make me feel like crap just so I can get through the day? I HATE THIS I HATE THIS I HATE THIS I HATE THIS!!

I feel like I will never feel healthy again! I just want to be normal... Guess I cant make it a day without the meds... Time to take my Adderall then I will remind myself all day to unlock my jaw, to force food into my mouth, not enjoy a single bite FML

Sorry about this Pitty Party it didnt start that way but now Ive been at work for 1:20 mins and realized the N really holds all the cards, Im a puppet on its strings... I feel hopeless, Ive tried being the lil engine that could "I think i can I think I can" but I cannot! If I could just sleep all day, if I just had nothing I had to do, If I could just have a few days where I wasn't Narcoleptic!

[Hank]

Well, you learned something Megs. *!#$%- so sorry you are paying the price today. Consider it time off for good behavior. I cannot get away with it either- I always pay the price. Slow and steady wins the race. But remember, you just had a very full/fun weekend and a big exam. You are trying hard and we all need a break occasionally. Chalk it up to experience. Tonight and tomorrow will be better. I have learned to plan time for being spontaneous. Friday nights are best for me, and that helps reduce the price tag for fun. I call it my Fun Hangover, even though I don't drink.

[thecatnapper]

Well, I still haven't started Xyrem....long story...so I can't say how it is with that but I took Adderall for a long time and once I made the mistake of going out for girls' night and having a couple of cocktails. I figured I was safe being that it had been all day since I'd taken my dose of Adderall. Later I was like, Duh! it stays in your system. I knew that but I guess I just wanted to let my hair down a bit. I hadn't had a drink in years but I used to be able to have a couple of drinks and still be able to function. After the second one I told my friend that I could not drive and we had to spend the night in my car because she couldn't drive either. I was so sick that I was heaving over the railing of the parking deck and I'm sure anyone who witnessed it thought that I had been drinking excessively or that I was a lightweight that couldn't hold my liquor. I was pretty mad at myself but I was more mad at the situation of having to take such nasty meds and not being able to choose to drink if I wanted to, so I know how you feel Meg. I've been off all meds for a few months now because I never started any back after the second sleep study and I've been holding out for Xyrem. It sucks to not be able to sleep at night or stay awake during the day but it's so nice to have a clear medicine free head. I've weighed the options over and over but I think I need to at least give the Xyrem a shot, that is, IF I can ever get started on it. My health has suffered so much because of these crazy sleep issues so I'm gonna go for it even though I'm not thrilled about having that much salt in my system!

[Megssosleepy]

Well, I still haven't started Xyrem....long story...so I can't say how it is with that but I took Adderall for a long time and once I made the mistake of going out for girls' night and having a couple of cocktails. I figured I was safe being that it had been all day since I'd taken my dose of Adderall. Later I was like, Duh! it stays in your system. I knew that but I guess I just wanted to let my hair down a bit. I hadn't had a drink in years but I used to be able to have a couple of drinks and still be able to function. After the second one I told my friend that I could not drive and we had to spend the night in my car because she couldn't drive either. I was so sick that I was heaving over the railing of the parking deck and I'm sure anyone who witnessed it thought that I had been drinking excessively or that I was a lightweight that couldn't hold my liquor. I was pretty mad at myself but I was more mad at the situation of having to take such nasty meds and not being able to choose to drink if I wanted to, so I know how you feel Meg. I've been off all meds for a few months now because I never started any back after the second sleep study and I've been holding out for Xyrem. It sucks to not be able to sleep at night or stay awake during the day but it's so nice to have a clear medicine free head. I've weighed the options over and over but I think I need to at least give the Xyrem a shot, that is, IF I can ever get started on it. My health has suffered so much because of these crazy sleep issues so I'm gonna go for it even though I'm not thrilled about having that much salt in my system!

I have had to change my diet because of the salt. And I LOVE SALT! I think you should really try and start it soon. Your body needs the deep sleep X provides to recover and heal! I just got some new tea called "get restored" its made by the republic of teas... anyhow it is supposed to help your body manage your potassium and sodium levels after a heavy work out, but sounded like it could help after a long deep dhydrating nights rest as well. I still take my supplemtental drink in the am and my multi... I will let you all know if it makes me feel any better. lol

[thecatnapper]

I have had to change my diet because of the salt. And I LOVE SALT! I think you should really try and start it soon. Your body needs the deep sleep X provides to recover and heal! I just got some new tea called "get restored" its made by the republic of teas... anyhow it is supposed to help your body manage your potassium and sodium levels after a heavy work out, but sounded like it could help after a long deep dhydrating nights rest as well. I still take my supplemtental drink in the am and my multi... I will let you all know if it makes me feel any better. lol

Well, it's not that I haven't started because I didn't want to or was seriously hesitating. I cannot believe the insanity involved in getting it! It's been almost 2 months since my doc said he was writing the scrip. My BP was a bit high that day so I had to monitor it for a week and then send him the results for him to decide if we needed to do something about my BP first. Then, the next week he was on hospital rounds so nothing was done. The next week his personal nurse (the airhead) was on vacation so nothing was done. Finally after 3 weeks another nurse called and said the doc wanted to know if I had done the BP log and mailed it in. I was like YES I DID GO LOOK FOR IT. So they found it but the Xyrem still was put on hold because then I was in testing for MS which thankfully, it appears I don't have it. Then his nurse called me in another week and asked if I had decided if I wanted to take Xyrem or not. I have no idea why she didn't realize that I had already said I wanted to take it weeks before that and all along I thought she was doing the paperwork and calling the Xyrem pharmacy but she had done absolutely nothing. So then it was another week before SDS pharmacy called me. Then my insurance company kicked it back for a prior authorization which I had assumed my doc's nurse had already done. So another week or two went by and they finally called and said the insurance had approved it but they would only pay a small part and that I would be responsible for about $1130 a MONTH!!! I laughed out loud and said forget it folks, as it stands I have about $2 to my name. Then they said there was an assitance program I could apply for. So, now they are deciding if I qualify for assistance based on my SSDI. So I've just raised the white flag and surrendered to whatever happens. If the gov't thinks it's cheaper to pay me SSDI and medicare than it is to give me the meds I need so that I can possibly get back to work, then let them continue to pay me to sit at home. I'm just done fretting over it. I've accepted my situation and whatever happens and I just take things one day at a time now. See, i told you it was a long story!

[Megssosleepy]

Well, it's not that I haven't started because I didn't want to or was seriously hesitating. I cannot believe the insanity involved in getting it! It's been almost 2 months since my doc said he was writing the scrip. My BP was a bit high that day so I had to monitor it for a week and then send him the results for him to decide if we needed to do something about my BP first. Then, the next week he was on hospital rounds so nothing was done. The next week his personal nurse (the airhead) was on vacation so nothing was done. Finally after 3 weeks another nurse called and said the doc wanted to know if I had done the BP log and mailed it in. I was like YES I DID GO LOOK FOR IT. So they found it but the Xyrem still was put on hold because then I was in testing for MS which thankfully, it appears I don't have it. Then his nurse called me in another week and asked if I had decided if I wanted to take Xyrem or not. I have no idea why she didn't realize that I had already said I wanted to take it weeks before that and all along I thought she was doing the paperwork and calling the Xyrem pharmacy but she had done absolutely nothing. So then it was another week before SDS pharmacy called me. Then my insurance company kicked it back for a prior authorization which I had assumed my doc's nurse had already done. So another week or two went by and they finally called and said the insurance had approved it but they would only pay a small part and that I would be responsible for about $1130 a MONTH!!! I laughed out loud and said forget it folks, as it stands I have about $2 to my name. Then they said there was an assitance program I could apply for. So, now they are deciding if I qualify for assistance based on my SSDI. So I've just raised the white flag and surrendered to whatever happens. If the gov't thinks it's cheaper to pay me SSDI and medicare than it is to give me the meds I need so that I can possibly get back to work, then let them continue to pay me to sit at home. I'm just done fretting over it. I've accepted my situation and whatever happens and I just take things one day at a time now. See, i told you it was a long story!

OH MY WORD!! What a mess. I want to call my insurance company and tell them I will save them a ton of money... They just have to pay me half of what they give to SDS and I will quit my job and take naps and handle the N that way! I wouldnt need the Xyrem if I need not work! My insurance forks over $7000 a month for that stuff! I think you are better off enjoying life at home then dealing with all that non-sense! I am not sure why for some it is so hard to get! They told me my co-pay would be $200 and I said cant do it then, and they said oh we will assist you with that! (of course they will they still get $7000!) Its a joke really, how much does it cost to make this stuff? If I could handle the stimulants I wouldn't even bother. But, I have to get off these things!
SO happy to hear your negative test results! I am sure that is a relief! Good Luck! I am glad that you can sit back and take it one moment at a time!

[thecatnapper]

OH MY WORD!! What a mess. I want to call my insurance company and tell them I will save them a ton of money... They just have to pay me half of what they give to SDS and I will quit my job and take naps and handle the N that way! I wouldnt need the Xyrem if I need not work! My insurance forks over $7000 a month for that stuff! I think you are better off enjoying life at home then dealing with all that non-sense! I am not sure why for some it is so hard to get! They told me my co-pay would be $200 and I said cant do it then, and they said oh we will assist you with that! (of course they will they still get $7000!) Its a joke really, how much does it cost to make this stuff? If I could handle the stimulants I wouldn't even bother. But, I have to get off these things!
SO happy to hear your negative test results! I am sure that is a relief! Good Luck! I am glad that you can sit back and take it one moment at a time!

$7,000 a month?!?! Are you freakin' kiddin' me??? How the heck does it cost that much to mix some sodium and some oxybate together. Nevermind, I know how because I used to work in a medical practice where drug reps brought catered lunches EVERY DAY of the week for over 20 employees. One day someone said the rep dropped the reciept on her way out and it said over $500. That's for one day's lunch! I started taking my own lunch after that and I only worked there for a few months. It made me sick that I had ever eaten the food. Can you believe that some of my co-workers would actually complain if they didn't like what was brought? That stuff makes me so mad. It drives some people up the wall. Just google the words "Big Pharma" and you'll see what I'm talking about.

Good Gravy! I'm with you, let them give me half of that money. Seriously though, I do want to get better and get back to work even if I can only do something part time. This mess of not being able to even make plans to go out with friends is for the birds. I never know if I will have a day that I can make it without a nap or if I will need 4 or 5 naps in one day. I've accepted the fact that I need to be home right now but I don't want to be broke and homebound forever. And I'm one of the fortunate ones because I made good money when I was working so I can support myself now on what I get for SSDI even though I have to watch every penny and have to borrow from my Dad a lot. Most people on disability can not support themselves. So, I'm glad that I pushed myself so hard those last couple of years and made myself go to work even though I could barely function because if I hadn't I would get much less.

[Megssosleepy]

$7,000 a month?!?! Are you freakin' kiddin' me??? How the heck does it cost that much to mix some sodium and some oxybate together. Nevermind, I know how because I used to work in a medical practice where drug reps brought catered lunches EVERY DAY of the week for over 20 employees. One day someone said the rep dropped the reciept on her way out and it said over $500. That's for one day's lunch! I started taking my own lunch after that and I only worked there for a few months. It made me sick that I had ever eaten the food. Can you believe that some of my co-workers would actually complain if they didn't like what was brought? That stuff makes me so mad. It drives some people up the wall. Just google the words "Big Pharma" and you'll see what I'm talking about.

Good Gravy! I'm with you, let them give me half of that money. Seriously though, I do want to get better and get back to work even if I can only do something part time. This mess of not being able to even make plans to go out with friends is for the birds. I never know if I will have a day that I can make it without a nap or if I will need 4 or 5 naps in one day. I've accepted the fact that I need to be home right now but I don't want to be broke and homebound forever. And I'm one of the fortunate ones because I made good money when I was working so I can support myself now on what I get for SSDI even though I have to watch every penny and have to borrow from my Dad a lot. Most people on disability can not support themselves. So, I'm glad that I pushed myself so hard those last couple of years and made myself go to work even though I could barely function because if I hadn't I would get much less.

Yeah the cost of these meds is just silly! I wish I could stay far far away from Pharmaceutical Companies... but we are kindof stuck!

I remember you saying that you do art and make crafts... have you ever thought about turning that into some profit. In the small town where my parents live they have this fair thing every year... you can rent a booth and people will actually pay for the stuff you make! I make jewelry... and not to brag... Im not all that bad at it. If I had the time I would try to make a piece or two a week and have my mom sell them around Christmas at her school or get a booth during the fair. Even if I broke even I find it would give me something productive to do and It makes me happy! But, right now time doesn't seem like it can allow for that! I know quilting can make $$ and that is such a relaxing past time. You could think of it as a part time job! Good Luck!