The World Is Comical

The World Is Comical

Yes the world is full of a cruel irony that so many of us have come to know well. I have recently come to terms with the fact that God at times as an obnoxious sense of humor! lol

I finally got the sleep medication back, & free of charge I might add! God is so good to me. I have been literally spiraling into a horrid sleepless existence but He provided for my needs before I could go too far. One thing is for sure, I won't be taking that medicine for granted again!

Nailed

Yesterday, after the babysitter was unable to make it at the last minute, we ended up having to really ha to crunch to clean up the house, get the dr's appts in and keep the kids happy. I got home around 11 and Paul had been working on both the house and work. the kids were happily & busily playing in their playroom (for the most part). When we got everything done & work was over I suggested we go feed the ducks. 

At Garfield Park in Mentor, Ohio we have been feeding the many Mallards and Canadian Geese. It' quite an enjoyable event. However, yesterday there was a man fishing right where the ducks get fed so we ended up going on an adventure to get to the other side of the pond. We found a great clearing where we were able to feed 2 families of ducks. I wanted to go out to a dry spot where the ducks were chilling in the sun, but  there was a muddy path in the way.

I'm assuming someone decided to put down a 2x4 so that people could walk over the mud & into the dry area where the ducks congregate. WRONG. I got to the end of the board & stepped on the sharp part of an old nail inside the board. Of course I fell right into the mood next. The mud was very bad too! I felt so dumb. I wobbled back to the car, terrified I would get trouble from it. We went to urgent care & they made me soak it, and then bandage it up. It didn't hurt last night, but NOW it DOES! 

Chaired

All that said, I will be spending a lot of time on the couch today as it hurts a lot more when I walk it. I can barely step fully down! I also need to get new dressing for the injury. Joy! ALl this and we have the wedding of a dear friend to attend in which I am helping out with, and then Paul's mom coming and then us going to my Moms! I just realized there might be logistics there with normally visiting my mom for this holiday. I'll have to look into it.  

That's really all I have to say.

Oh & BTW

Thanks Paul Corey! We did an awesome job getting the house ready! 

Missing Grandmpa & Grandma

I am tired today. I just awoke...again. No kids yet (gasp!) so I figured I'd try to write a bit about some feelings that came from a dream I Literally just had.

I grew up at my grandparents house for a great duration of my childhood, and half of my high school years. Every weekend, summer, and sick days I would be with them. They have honestly morphed into my Mom & Dad in my heart. I suppose that it is completely valid to feel equally connected to my Aunt Rosie. She is definitely more like a big sister to me than an Aunt. My  mom & I have a great relationship and I am so glad that we are the quirky little family we are, even with all the turmoil  that created us. 

That being said, I dreamed I was helping out at their old green house on Vine Street and that Grandma was gone (died) and Grandpa was out with Uncle Frank doing some random building DIY project. The next door neighbors came over to play in our back yard or something like that and the whole sewage system backed up! I was there desperately trying to get the water to stop running sso the ick water would stop flooding the house! It was quite gross. The end of the dream gave me a few quick feelings:

#1 I took them for granted and I miss them both dearly#2 Even though Grandpa is still living, he will never know me or my kids and I am very sad about that#3 He will never know me as a real person (on meds so I'm not a Narcolepsy monster), nor will he ever get to know my husband or kids. 

This honestly bothers me because there has been so much in my life that has just disappeared and I feel the loss so strongly. Paul informed me that I wake up frequently yelling at him over feeling frustration towards him.  He has caught me shouting "If you had only done it this way, it would have been fine!" and things like that. The funny thing is, when I think of grandpa, I feel shame. I feel like he sees me as a failure, burden and deadbeat. I failed to pay for my college loans, so they fell on him. I even failed to pay back my loan for a car he gave me, even though I paid way more than I borrowed back to the bank. The bank wasn't really very nice about the whole thing, which is why his new wife told me to stop paying because it wasn't doing any good. 
One thing is for sure. He is the closest thing to a dad I have ever known. Sure, I have Roman, my real dad, but he was gone for so much of my life that I don't have that special Father Daughter connection with him. Grandpa worked hard to make sure I had food, clothes, toys, medicine, and what not. He was a grump some times and he has his flaws but he was my dad. 

My heart aches when I think of how little I hear from him. It's supposed to be easy to pick up the phone and call or to drive over & visit but honestly, my heart grows terrified every time I even think of it. I feel guilty and shameful. I feel like a failure and it feels horrid. I look at him now, with his new wife & the fact that he told my mom & aunt that this is the new family he's always wanted, is proof that no matter how hard I've tried to succeed as a woman of God in this life, I'm always just going to be a disappointment in "my fathers eyes." 

I take joy in knowing that my Heavenly father loves me & is always helping me better myself and grow to be like Him. I know that He will never leave me or forsake me, nor will He ever just drop me for some other person who performs better. His banner over me is love and his name for me is Daughter and Princess, Warrior and Jewel. He has for me, every single bit of love that I could ever need. Every ounce of approval that I could ask for and offers an overflowing abundance of affection for me. Still, I miss that Dad I used to be able to call when I was struggling and have that deep theological conversation with. The one I could argue with and find that deeper meaning and the conflicts within my own thinking, only so I could weed them out and find better way of thinking. 
Honestly, I miss him so much it makes my heart sink. I fear mostly the phone call. You know the one, "I'm sorry to tell you but Larry has passed away. The calling hours  funeral will be......" Just the thought makes me nauseous. I dreamed of camping with him and my family. Of him showing my little Jonny how to fish and how to pray. I remember his joy for "his little girl" (aka me)  and see Katherine, name after his wifes' middle name, and wonder how much fun she would have with him while sitting on his lap & listening to Bible stories. 

I miss Grandma too, she was the glue to our family. When she left, it all fell apart. We all went our own ways and little communication happens now. Her words echos in my heart and my ears, "Through it all, Yes Through it all, I've learned to trust in Jesus, I've learned to trust in God! Through it all, Yes Through it all, I've learned to depend on Jesus Name." I think of her gorgeous voice, her joy in song and her love of worship. 

I miss you both and I wish you would be here, but I know for whatever reasons, God has taken you elsewhere. I can't wait to see you all again. In that, I find much joy.

 Blessings and remember: 

"Don't it always seem to go  that you don't know what you've got till it's gone..."  

It will happen in a moment, in the blink of an eye, when the last trumpet is blown. For when the trumpet sounds, those who have died will be raised to live forever. And we who are living will also be transformed." 1 Cor 15:5

Click to see a video of Grandma!

Dual Postings

Hey what do you know! I'm getting 2 posts in consecutively! Awesome! What went down of great interest in my life yesterday? Well, lets see here, the day started slow, ended late and was overall a pretty good day!

At 12 we headed over to see our grand and wonderful friends the Cole's. I must say Jillian is my favorite friend at the moment. She is full of joy, radiates the Lord and is a great down to earth real person! She always seems to bring me to another level of self awareness which is an awesome attribute of a friend. Helping someone to reflect inwardly is an awesome gift and she definitely has it. Odd enough to say, I think of her quite frequently, especially when passing a flower shop. It just seems I always want to shower her with blessings because my heart is so glad to have her in my life.

Anywho, We hung out with then and Paul worked with Andrew to spread gravel in their driveway while the kids monkeyed around "helping". Jillian and I were able to stay inside and chat over a lovely cup of tea and I got to work on a little of my knitting practice. It was such a nice day! We were able to let the kids play outback while the guys grilled and the girls prepared the rest of the food.A bit later, Jillian (Taste Tester Extraordinaire) assisted me in the fine art of Smoothie Concocting! After a few minute and lots of loud ice crushing and pureeing we had fabulously yummy Strawberry & Banana Smoothies!  Four O'clock rolled around almost instantly it seemed. We had to go as they had evening plans for fishing! I'm so jealous!

More fun was instore for the Corey clan as we drove to the Mall! We didn't intend on heading that way, it just kind of happened. We promised the kids ice cream for being good, but Kat almost immediately konked out being that she skipped her normal nap to attend our little Gravel spreading date. He had a ton of fun though, so I'm glad she came. Paul decided that I had a good idea with feeding the ducks, so I asked if I could get a pretzel while Kat slept in the car! He said yes!!! So it was off to the Barnes & Nobles to grab a quick Spinach & Assiago Toasted Pretzel. Little Did Paul know I also sneaked a surpise slice of Hersheys Cheese Cake for him. Hehe.

I browsed the shelves while there looking for a good Knitting manual and only found the crochet book I was wanting buy. However I'm not really in a crochet mood as I've been really enjoying the 1 knit stick I've learned. It's nice doing something new. Now if only I could get someone to teach me how to play the violin I bought! We left B&N and went to the Mall for ice cream. I took the kids for a pit stop and Paul did his own things while I went to get the kids their ice cream. Orange Julias had HUMONGOUS line, so naturally with my kids being as restless as they are, I went to the next closest yet quick place to kill time until the line got a little smaller. You guessed it. BUILD-A-BEAR!

You who know me are aware that I have a fondness for said stuffed animal workshop. We previously purchased Pinkie Pie & Rainbow Dash (My Little Ponies) so we picked the capes created especially for them. Jonny had to get in on the action so he grabbed some cool early 90's shades for his best bear pal Bubbah. I was happy to indulge in their free beach towel deal as well as their $10 for $5 gift card promo.

We met back up with Paul the kids & Paul ate their ice cream & I went to Auntie Anne' Pretzels to grab my Cinnamon Pretzel nuggets. From there we ventured to Garfield Park in mentor to feed the ducks & geese. I have to say that we  had a BLAST feeding them. The Canadian Geese were a little over zealous, nipping and hissing at every turn trying to get the bread from your hand!They remind me of a sassy rooster we used to have called Ralph Mertz. There were several gorgeous mallards and their babies  along with a few gorgeous white Pekin Ducks there too. They were particularly gorgeous!

It was particularly fun because there was a mommy with her babies swimming on the pond & several older children mallards just moseying around the park begging for food. We did end up having to take our leave not only because our bread was gone but because a few of the Canadian Geese became a bit too enthusiastic. Paul ended up having to defend Kat because it was just as big as her almost! It got something coming to it when it charged and ignored Dad! Paul tapped it with is foot to put it in the correct place! Jonny got to learn the difference between male & female Mallards too. I had such a great time as well as the others. I was tired, but I'm so glad we went!
(pics to come)

When we went home Paul started getting an odd stabbing pain in his back & became very grumpy & tired. He went to bed when we got home for a few minutes. I got the kids & the groceries in and then they watched Madagascar 3 (AKA Afro Circus) & then headed to bed. Paul was so nice as to let me lay down while they finished the movie & we both had to yell to get them in bed. (As per the norm, they resist the doom and gloom of bedtime.)

Sleep was kind of good, but filled with dreams yet again. I can't wait to sleep peacefully and regenerate again! (sounds like some kind of morbid video game talk...hehe) Xyrem is ordered and I'm waiting to get the decision on my application for assistance. I hope it works. We also are awaiting the whole final tax thing & Paul is going to be cleaning out the tent soon so we can use it again! Fathers Day weekend is supposed to have phenomenal weather! I hope we can camp in the backyard for it!

Finally, I started a "sleep/dream journal" to keep track of how my nights go & how the meds I have now are working.

Here's today's entry:

6/8/13
-10pm took Ambien
-12 woke up & took Benadryl
-2am got restless  moved to couch
-2:30 took Aleve & turned on Dream Sleep and tried again
-4:30am got a drink and restarted cd
-6am up for the day (I got to "sleep in" cuz the kids are piled on Paul(which is why I left at 2!))

There you have it. Talk to you soon. Thanks for reading.

Nightlife and Narcolepsy

I am terribly sorry it has been so long since I last blogged. Truth is, things haven't been going too bad, but that was me trying to push through it & God keeping me looking on the bright side. Tonight, all that is starting to collapse because once again, I am losing my mind thanks to the night terrors & paranoia caused by Narcolepsy.

The nightmares have been going on for about 2 weeks now. I have always known of them, but it has been so long that I forgot how seriously they mess with you. It's currently 4:30am and I have a pot of strong coffee brewing and a load of clothes in the wash.

It started with a night terror, waking up thinking there's something wrong with the neighbors talking at 1 am or some odd time like that. Honestly I wasn't looking at the time. I asked Paul to look & he did. I know now that I'm up that it was simply the neighbors out on their deck talking with company. Still it sounded like voices in my house; and they were whispering. Whispering means plotting and plotting means they must be devious. We all know this is not true, but you can't tell my mind that.

Narcolepsy is a horrid beast who steals your sleep and fills your mind with terrible images, unbearable paranoia and then destroys your desire for life and relationships. Your emotions tremendously overwhelmed because you know that everyone around you is living in the real world & can't even begin to relate. Poor Paul has no way to appease the extremely paranoid me at night. He tries, I know he does, to give me comfort as I am totally flipping out, not able to get up, move, or tell whether I am audible or if I'm still in a dream.

Perhaps you have had one of those nightmares where you are trying to scream by no one hears you, or if you've ever had one where you paralyzed and can't make your body tell people you are in pain or that something is happening. This has been my life in dream land for some time. It actually used to be my daylife too. Paranoia gets worse in the day over time without the medication that makes me sleep. It just continues to drain my brain of the sleep it needs to function normally.

Ironically, I sleep much better during the day for some reason. I also don't have as many dreams. The only correlation I have been able to find is that if I sleep on my back, the back of my head always seems to feel really funny when I wake up. I get a really bad headache and can feel a weird rush of chemicals when I wake up. It is really odd. Kind of like when I used to have a sleep attack in High School Spanish class with Mr. King.

He was such a nice guy and a great teacher. He found out that if he came over & touched my shoulder I would wake up. The problem was that if you did that, I simply fell back asleep! He would walk away & out I went. It was such a pain! It got so bad, I was even able to sense that he was coming to wake me up and I would look up, acknowledge him, then go right back into the sleep attack.

He began to then make me stand, which worked wonders. Slowly though, my mind just sank into the system of coping which made me sleep stand and soon I could walk in my sleep too! I remember coming home from Model United Nations meets and falling asleep on one side of the major road and waking up on the other! I've walked into parked cars, walked over 1 mile, and even had full conversations while asleep. My grandpa used to tell me he'd come to get me for dinner when I was in my room & I would curse him out because he tried to talk to me! He had no clue I was asleep! I would be sitting there, wide eyed, watching TV or working on my scrapbook. Little did he know, I was sleeping and auto behavior was taking over. I wasn't even 18 yet.

Honestly, I can't live like this. Perhaps I should just sleep all day and find a night job that pays as much as Paul makes. Sadly, unless I go into naughty phone call industry, (haha, I would NEVER do that) such a feat would be completely impossible, nor would I enjoy it! It's a laugh to imagine though! (Sorry, I just had to add a light-hearted joke in there to lighten the mood)

Downstairs, while I was putting the laundry in I though, "Life, I HATE YOU." IT's just not fair. How do you live this way? You don't, that how. You cope & coping isn't living. You might as well be dead. You are nothing but a burden and a pain to those who have to try to live with you. Your heart and head clash and your emotions make you impossible to please and you're usually a bear. I've found most people with Narcolepsy have either stayed single all their life or their marriage ended in a horrible divorce.

Paul & I just had a fight because he tried comforting me in bed after waking numerous times begging him to look to see what this noise was or because of things I swore were happening. He rubbed my leg and told me I was just dreaming. I got so angry because it's just not fair! I know what I heard! Rationally I also know I was dreaming, but my emotions are ANGRY because he just doesn't know how it feels to know in your rational mind that's fake but feel with everything inside of you that it is 100% REAL!

While writing my kids woke up. Now, I have to get up for real even though I tried getting up to give myself reflection time. Kat is trying to push my hands away from the laptop while I type because she wants attention. Alas, I must end this novel of protest and disgust with the world of Narcolepsy. Please keep me in your prayers.

 I faxed in my paperwork for help with the sleep medication and I hope above hopes it will be processed and I will have it in hand by the end of this week. I have a wedding to go to and the kids are coming with us. I haven't see this wonderful friend in over 5 years. I am excited to see her, but I don't want to see her like this. I don't think I could bear it.

Blessings and have a great day guys. Thanks so much for reading and for your support through prayers, friendship, and just letting me know you're there. Thanks for putting up with me. I love you all.

God Bless

Reviewing the Basics

Graduation, Summer, & Swim

These last few weeks of life have been quite interesting indeed.We have so many plans for the summer that the current present time is evading me. It's almost as though I'm planning for next week, last week! The only thing is that last week came late and I'm all willy nillly trying to get it in order because I'm aware it's late, but it seems that I still have time because I actually have no internal calender that is correctly functioning! 

Phew, I hope that made sense! 

It' true that most days I feel like this! (see above pic)

In all actuality there are some things we are just now approaching or just finished with, that seemed stressful but really didn't turn out to be. 

1. Ariel Arnett's Graduation Party
2. Jonny's ADHD an Sensory Evaluation
3. Camping & trip to my Moms for Memorial Day Weekend
4. Switching Paul's office/the kids play room
5. Losing Insurance (Thus my Medications)

While some of these were obviously fun, they all bring on a lot more stress normally than we like to have in this house. Paul particularly likes having me get the kids ready because just that in itself is stressful for him. Let's not even talk about this weather! He has very light skin and burns easily so we don't really go many places without some trauma in the form of sun burn or grumpy Dads due to terrible overheating. 

Ariel had a great party but our gift flopped in the long run. What was supposed to be a fun & relaxing Spa night out stare fabulously but fatigue got the best of me & I ran a curb slightly on the way home. Poor Ariel got whiplash from the jarring. She went to the docs & is ok, but seemed sad when we said goodbye. But she looked fabulous though!

b4

                               

  b4             after

I ended up going short again from long. I liked it long, but it was getting a little out of sorts with no shape and no real style. I got my basic cut and then colored it when I got home. I go back in july to have it highlighted in Red. I also found out that "The Kids Next Door" is their kids cutting place which apparenlty does awesome hair cut for kids! I can't wait to go!

more later!

Not by Choice

Good day to you all of my comrades out there in internet land*! (*not an actual place)

Here are the moments in the day when I have great joy! the kids and husband are both still asleep and I have been up since about 3:30am, trying to get my body & brain to keep resting. Now is when I am not fighting the horrid monster I call narcolepsy all that much. When I first wake up I am chipper, full of energy and usually pretty happy! Also, this is when I tend to try to do something I really have been wanting to do, such as write my blog, make some breakfast, watch a show, or play a game. However, usually about eh, 45 minutes into this flow of energy, I completely crash! I get overwhelmingly sleepy, my eyes start watering & burn to keep open. The thought  that I must sleep starts getting PAINFULLY loud.

Unfortunately this is just about when my kids wake up & Paul comes around, ready to go work & I'm stuck in this zombie-like funk for a few hours. Usually I try to just catch a few winks right before the crowd arrives by ending early, but some days I don't really even bother trying to do the thing I want. I just laze for a a bit and casually sleep & snack & do this or that until they wake up.

Now please understand, this is when I am on medicine. Medicine you say? Well, let me explain. Being narcoleptic, I basically have a brain that doesn't work right! haha! See you knew I was kinda nuts didn't you! Well now we have proof! LOL When I was 12 years old, my teachers called my grandparents (who were raising me at that point) in for a conference. The particular teacher taught reading. I LOVE reading & Miranda (my ultra-awesome BFFL) was in my class. We're talking 8th grade people! My hormones were not nice to me and the sleep disorder was coming into full swing.

Regardless of the fact that my chatty friend and I (what 12 year old girls aren't chattie?) were closely seated, I was always falling asleep in her class! The teacher suggested that they check up on me. It was quite comical because the teacher accused me of "staying up all night playing Nintendo  by telling my grandma that I told her I was doing it! My grandma kindly responded that we didn't own a Nintendo  I'll never forget the look on that teachers face. She turned about 30 different shades of red! Thus started my life a a narcoleptic guinea pig!

Wait a minute?! What was that? Why would I call myself a guinea pig? Well, let us just say that in 1995 there weren't too many 12 year olds diagnosed with Narcolepsy, let alone treated for it. Narcolepsy wasn't a main stream illness at that time. None of my teachers knew what it was, nor my parents, nor my friends, nor half my doctors! I was diagnosed as a "textbook" case of Narcolepsy though. Numerous sleep tests later, they said I basically fall "asleep"  less than 15 seconds after the lights go out & then I re-enter the sleep cycle over and over again all night long, never finishing any of them.

It basically was explained to me that I have a brain that thinks that the hormones are released to tell me to sleep correctly, are actually foreign and so they attack them as well as the place where they are released. Many studies have shown that the longer you have Narcolepsy, the worse that receptor becomes damaged.

So basically, long story not short, When I sleep at night, it's in short spurts, (maybe 20 mins if I'm lucky) and never is it actually restful. I usually have Night terrors all night long, including sleep paralysis. Night terrors is well known in infants and small children, however, it occurs in narcoleptic's frequently because the brain doesn't realize it's dreaming & processes them as real. Hypnogognic hallucinations are especially frightful because they are dreams you have when you are waking around in broad daylight, fully awake, but your body thinks you should be sleeping!

It is all very scary to say the least. Growing up as a teen, it was horrid. I was always on edge, paranoid, and afraid to sleep. The medications that they kept putting me on were a combination of stimulants & antidepressants. The doctors honestly had no clue what they were doing and were giving me apparently illegal dosages of drugs like "dexedrine" "adderal" "wellbutrin SR" etc. Not all the meds were overdone, but enough were that I have permanent dry mouth, I struggle with memory loss, & have issues with dependency on some medications if I take them too long. I even suffer from drug tolerance which means I can't take a medication for too long because my body gets used to it more quickly than normal.

All that being said, Now I have been given a great doctor by God alone! He has been such a help! He has explained so many things to me about Narcolepsy and helped me find out what works best for me! I also have found an anti-anxiety/anti-depressant which works to help alleviate my chronic pain, fibromyalgia, and overwhelming coping issues based on my lack of sleep. Could you imagine how you would feel if you LITERALLY HAD NO CHOICE but to stay awake every night for all of your life! All you would get is a quick 20 minute nap every now and then but while you attempt that nap, you have to also watch a tv which would constantly play some kind of graphically morbid horror flick?!

Paul said to me yesterday, "The only thing I can't wrap my head around is that you  have choice. " Puzzled, I asked him to explain.  "Well, I can choose to stay up a few nights, like an idiot, & have to deal with the tiredness the next day, but I had the choice. You don't. You cant' choose to sleep, you just don't have the choice, yet you still have to deal with all the tiredness."

It encourages me that God gave me such an awesome husband. He has shown me things about myself that I would have never been able to put into word! Such as, the fact that I really am a clean freak, but I just have so little energy that I end up getting frustrated and taking it out on others by #1 expecting them to do it and  #2 sounding demanding or frustrated with people when I ask them to do something I can't! He nailed it!

In life it's so true that I have so much I know how to do, want to do, and CAN do! But I don't have the ability to do it because my brain doesn't give me the option. There are days when I feel like a giant waste of space. I just get so tired of felling like I'm a burden to the my husband.  I also feel churches will never really understand or care about people with disabilities or special needs. While I know not every one can understand or minister to people with invisible illnesses, I feel sometimes, like it's me who is invisible.

On a closing note, thanks for reading my blog! I'm sure it's been a long read this time! Sorry about that. I am blessed and find great joy in my family and especially my husband who goes out of his way to be supportive and caring. I love you Paul. Thanks for being my one and only, always and forever!  (Come what May!) I know that no matter what happens, we're going to make it!

Blessings,

God's Beloved Angie

My Journey Begins

I have to say, I am not the most excited about this blog, but after much contemplation, I have decided my mother was right! I really do need to keep track of my thoughts, feelings, and experiences as a Narcoleptic Mom coming off all of my medications for Narcolepsy.

I have been anticipating the loss of medical insurance for some time because my husband is just about out of the "system" created for Disabled Adults. We will officially be "middle class" as of the end of the tax season.
This excites me and terrifies me at the same time. You see, I have always been "disabled" in some way because of this lovely thing they call Narcolepsy. I have always had some form of government insurance.

Generally speaking, this means I have always also had the label of being a dead beat because most people don't understand the difference between being "welfare" and being "disabled." I have to say I love my doctors and I have gone through many to find them. It makes me sad that there has been so many others who have just destroyed my faith in the medical system. I'm happy to say I have finally (after a terrible 20 year journey) found a medication combination that has enabled me to lead a decently productive "normal" life.

In high school and college I was not so lucky though. I had been given high doses of stimulants & anti-depressants, along with behavioral modifying drugs such as Depakote, Dexedrine/Dextroamphetamine
Imipramine/Tofranil, Methylphenidate/Ritalin, Provigil/Modafinil, Wellbutrin, etc. This doesn't even include the other problems that I was being treated for, such as chronic pain, fibromilgia, reoccurent dislocation of the major joints, bi-polar depression, and chronic fatigue syndrome. I was on pain killers, muscle relaxers, stimulants, and anti-depressants all at the same times.

When I left home for college (an idiotic attempt to get out of the system by getting a "education") I didn't get the insurance anymore because of red tape. I had to stop all of my medications cold-turkey, which was hell to say the least. I grew a lot while at college and was able to get the gastric bypass surgery and lose a great deal of weight! I hadn't felt so good in a long time! However, the absence of weight didn't change the sleeping disorder. I was having all the same issues as before only now I was not as big!

Upon returning home from college early, I was unable to secure a job due to motherhood. After a long period of time trying to make it on my own with a developmentally delayed child, I gave in and went to the doctors to see what new treatments they offered. I was happy to find that one of the medications I had been told about was now fully marketed and that I would be able to try it!

This was called Xyrem, or Sodium Oxybate. My life would never be the same! I had never slept before and my body had no clue. The change was dramatic! I was also prescribed Armodafinil/Nuvigil for energy and Duloxetine/Cymbalta to help calm the crazy anxiety that had developed from years of not sleeping. The combination was a miracle for me. I honestly wasn't sure what do with myself! I was able to obtain my drivers license, enroll my kids in community activities like swim & gym as well as fitness classes for myself like yoga and what not. I got my weight down to 157, but then started to gain back over the holidays.

In January Social Security informed me that they needed an update and sure enough, I didn't get the medical back. Thus leaves me where I am today. I am struggling to figure out how to handle my small children who are used to being fairly active. Sleeping has become pretty impossible and I honestly have a hard time even remembering how I lived before. Sleep is impossible because of all the hallucinations and night terrors. I am only 3 nights with no sleep meds and I am hearing sounds at night again. Weird dreams are not so bad, but violent terrifying ones are unbearable because my  brain can't tell if it's real or not! According to my mind, I'm just dreaming, but my brain thinks I'm awake. It's so bizzare and complicated that I just want to cry!

Honestly I have no idea how I'm going to make this work. No sleep, no energy kids fighting, being sick, being secluded to my home with no car, and not having the anxiety meds to keep me level.... I am scared!
How do you do this? How is this fair? I never knew before how it felt to sleep, so now that I have experienced real sleep and real energy, I am terrified at how desperate I'm going to feel for sleep. Where will all this take me, and why would God let me have to go through this?!

I have no real answers but I am not bitter. I am just scared. I wish the US government would realize that what we need is a program for disability medical coverage which cannot be affected by income. One which allows for a person to receive no tax breaks, no free money, no food stamps, no free childcare etc, but health care. I don't want anything but the ability to get my meds! It's just not fair. Tomorrows Topic... Outrageous Pharmaceutical Company Prices