Archive for the ‘Eating Disorders’ Category
The nightmare has begun.
I subscribe to an online newsletter from an Epilepsy Organization. Thus, it is “forsooth.” Two weeks ago there was a great big “WARNING” like in my title, except in their title, things continued in upper case. I would have been a fool to try and hope with all strength and power that this wouldn’t happen–but I am a fool and I did hope.
The nightmare has begun.
Exactly like a year and a half ago. June 2011. The suppliers could not get my Clobazam into any pharmacies–or at least not enough of it. I need it to treat my Typical Absence Status Epilepticus. The supply chain went dry and I had to quit cold turkey. It damn near killed me and I’m still trying to recover. A year and a half later.
The nightmare has begun.
First Step. Work with Non-Arsey Neuro. We came up with the most pathetic strategy IF this happened all over again.
Second Step. Call my pharmacy to see what’s happening on their end. I did today as I’m due for all of my refills.
The nightmare has begun.
My pharmacy is already screwed by the suppliers. However, for at least the next month (of my new script) they have enough in stock. Or so they said. I only have a month’s supply in my bathroom right now. Last month’s.
The nightmare has begun.
I contacted my old pharmacy who basically held my hand through the hell of losing it before. They don’t see a problem…yet? They are going to try and start ordering as much as they can, as fast as they can, and set it aside for me. However, the supply chain could disappear within days just like it did before. They’re going to keep me constantly aware of everything just like last time. And vice versa.
My current pharmacy is not that loving and caring. Fat chance. If they run out of it and can’t get more? That’s it. They can keep trying but obviously I will probably have run out of it by then.
The nightmare has begun.
I’m so unbelievably scared right now. If I lose this a second time? The results could be devastating. I’m not trying to sound like a Drama Queen. I’m actually being very serious.
The nightmare has begun.
Every other Anticonvulsant other than what I’m on (and what I’ve tried) will make it worse. Except for two. Two that I’ve never tried and who knows? Plus, a very whacked out drug that treats a shitload of other things, but it still could be tried. Along with the shitload, there is an indication for catamenial epilepsy. However, could I actually convince a Neurologist to go that far?
I’ve been crying all day while trying to “problem solve.” VALIUM!!!
Gravol too, as I felt like I’ve been going to puke up (and out) my entire gastro system. Actually, time for more? I’m about to start crying again and barf…
My sleep’s gonna be a mess, but sorry! Take one more Valium than prescribed? Just for today?
So yeah. This place and everywhere else I am, may get exponentially, seriously, more fucked up. Because I will be.
Ah, I’ll add all of my diagnostic Categories as they got exponentially, seriously more fucked up when I lost my Clobazam the first time.
Welcome to The Land of the Lost. Goddamn, motherfuck, shit smeared all over my face, rusty nails up my ass, maggot cock suckers, Mazel Tov Cocktail arsonists, all of this and more in my head!!!
“You’ve gone through “this” before (or something similar to it?) You’ll survive. You did then!”
“When one door (or window?) closes, another one always opens!”
If I write anymore of that Pollyanna bullshit people say when you grieve, I’ll puke. Everywhere.
I’ve been on both sides of the fence, and even straddled it, as far as break ups go. I’ve usually been the “dumpee.” However, I’ve also been the “dumper.” Christ, speaking of puking up there, when I had to dump someone for the first time, I actually did puke–every morning for almost a week before I delivered the fatal blow.
Being the “dumpee” is pretty ugly. Much worse, I’d say. One reason being, my ex-friend P. pointed out, is that the “dumper” had whatever degree of time to mull things over, then…BOOM! It gets dropped on the “dumpee’s” head when they have no clue.
Even much more worse, is when the “dumper” hasn’t revealed a damn thing, pretended all is well, and the “dumpee” keeps swallowing buckets of bull-wanked spooge. Oh, lemme tell ya, that bull spooge tastes so goooooood!
Straddling the fence is a bit weird. You end up at some sort of impasse. However, there are always “reasons” that cause relationships to end. Who’s tipping the balance of the scale? I can only think of two cases and it’s been me. I’ve been the one that’s felt “the reason.” I was extraordinarily lucky with those two cases, though. I managed to remain friends with both of the women.
Now? I’m sorry. All the Pollyanna bastards and bitches can go straight to Hades. I’m in a different world. Wait a sec’…did someone say Hades?
I’ve been turning my computer on/off/on/off etc. for…? I’m just lying in bed (lest somehow hauling myself out for med. appts.) And if you see me on Twitter, how much of an online mask am I wearing? Maybe I don’t even know! Highly possible!
I’m just sayin’.
A lot of my relationships haven’t lasted very long. Yet, they did exist. This one by comparison? It’s like I’ve known them my entire life! Even worse, we had so much in common, it was like we shared one life (on so many levels.)
Uh…Womb Twin Survivor stuff? I can’t decide if I feel like I’ve lost half of myself or not. Which totally fits for a Womb Twin Survivor! It could also fit simply because of the relationship on its own.
Of course we were different as well. We had a lot of really great times too. None of that should ever be forgotten.
But it can’t all be forgotten! Everything, just everything!!! Including the fact that I blew it all apart. Over and over and over again. Everyone and everything has their and its limits?
I don’t want to bring the Womb Twin Survivor aspects into it too much, but I fear there is a lot of it involved. A LOT. To state such things would turn this post into Satan’s Scripture (did someone say something about Satan’s Play Toy?) But I can’t exactly “apologize” for it. It’s hardwired. Nonetheless, it doesn’t make me feel any better about it all.
Maybe someday this person will return after some time. I’m not bowing down to Satan on all fours praying. But as always; bridges never burned, doors always open for anyone to come back into my life if they’ve left.
We were always so stubborn to stay together. Maybe that stubborn streak will show up again in staying apart–again. No expectations, but nothing would surprise me after all that we have been through. Including A LOT of surprises!
Back to living in the present? I’ll do my best to “do stuff” when I can manage to crawl out from under my duvet. When maybe able to do even basic tasks. Not to mention, stop crying at seemingly nothing worthy of tears on television. To me, that must be grief, all of my diagnoses making my head explode, or both.
It’s hard to do anything when you don’t care. Except you do care. So, so, so very much.
Satan’s a real prick. Thanks, buddy. Maybe this relationship was a match made in
heaven HELL. *PA sits on Satan’s knee as Satan strokes her hair*
The last post I wrote was totally stupid! And so am I for publishing it! I deleted it.
Stupid, both in the way I wrote it, and repeating again: I might not be here for a while, or who knows?
Not to mention, WTF about the South London folks? Not a slight, my dear UK readers. NEVER! I love you all. I love everyone who comes here!
Just more proof that my brain isn’t working (so well?)
If I’m not here, then I’m not here.
It’s as simple as that.
Oh, all of you
insane wonderful INSANE people that have started following my blog, giving me a “Like” on my posts etc. I’m just trying to get around to checking you out now, but I’m facing an avalanche!
I’m Bookmarking your Blogs when I see what wonderful things you toss off (sorry, had to write that for my new UK readers!)
I’m also trying to find out if you’re on Twitter so I can follow you. I’ve got a lot of work to do. A lot. Perhaps a decade or so to do it all? Maybe a bit less.
Still, thanks to all of you. It means so much that there are so many of you out there who want to read my…
Things that I type that are worth much more less than piss and puke.
Hi guys. I know all I’ve been blogging about is how sick I am/have been. But I must tell you, this beats everything.
So I got a bit sick. I had a cough. In my last post I joked about having a 101°F fever. HAHA! Not so much.
Within a few days, the coughing became so relentless and painful I could no longer sleep. Eventually, my fever became just as relentless: 104°F. Nothing would stop it. I called for an ambulance but the problem was, I’d just about lost all of my voice so they couldn’t understand me! They sent the whole brigade: Fire, Police, Ambulance.
Ultimate chaos. No one could understand me again (the posturing and pissing match between the police and paramedics was fun to watch though–despite me needing help–oh, well.) How many people were in my wee Bachelor unit? My memory is fried but 7 or 8 between the two? o_O
I got to the hospital but the paramedics were so frustrated by the time the police left, I know they got things messed up. Like listening to very simple things I said. When in emerg., one of paramedics smirked and said, “You’re going to isolation! You’re going to love it there! Your own room. Nice and quiet.” I was so sick I didn’t understand what he was saying.
Isolation Indeed! Uh, just how accurate are those medical shows? Well, being placed completely shut behind glass doors is definitely true!
Dependent upon who they were, they dressed up in all the gear. My doctor didn’t and my initial nurse for initial tests didn’t, but my second nurse and the X-ray techs did. I put my mask on whenever someone came in and I went for the X-rays. Protocol.
The “protocol?” I wasn’t told by the hospital to do it. I learned it. It was so odd staring at myself on the other side of the glass. I worked at an HIV/AIDS Hospice, and how many times did I dress up just like my nurse did when we had clients there in isolation?
I figured I was NPO for all the testing but finally a bag was hung to give me some IV re-hydration. But I wanted WATER!!! Again, too out of it to ask? My nurse then came in shortly with a wee syringe full of what, I asked.
Morphine. WTF? Holy shit!, Isolation! Heavy duty pain management! I said to her that I guessed it was for the pain of the coughing and to try to relax the muscle spasms. Dr. PA still on the job! But now Dr. PA even MORE out of it. Hello, morphine.
It took some more time as I was supposed to go through two bags for re-hydration, but I was NPO no longer. I received dinner! Okay, let’s try and eat? I was just happy to have wee cups for water I could drag over to the sink! Then I just lied there and tried to literally not cough my brains out.
Literally? Well, after my script. My drugs are pretty extreme. My cough syrup actually crosses my blood-brain barrier to hit my medulla, where my “cough centre” is. Then, it works its way down to my gut and gives me awful diarrhea. I don’t know for anyone else, but it’s highly sedating too.
My pills? I won’t even mention the name! I don’t want people to go searching about and…well, I don’t know what they’d think or do! However, rather more than “pretty extreme?” It’s a damn good thing Dr. PA still has/had enough of a brain to research them along with the cough syrup. A very simple contraindication is no NSAIDS. I was using Advil/ibuprophen for my fever!
But the ultimate, crazy, insane thing is that this drug can be used for other things (of course.) But how about the fact that it can treat anthrax and plague grab you? That was fun to read.
I’ve called Sweetie GP to see if she can call me back. I have half a voice now. This all happened when she was off for two weeks. She’s gotta know anyway! I have two pills left. One for today, and tomorrow. I have a feeling she’s going to say:“Get yer butt back to the hospital RFN!!!”
I’m clearly not better. The cough has subsided somewhat, but gets worse with the more oxygen I breathe. That definitely applies when trying to talk? Duh. I can’t eat at all. I also forgot to tell them some things because I was so out of it that are VERY important. Neurological. Constant falls, no memory, neuropathy.
If my home scale is right, I’ve also lost 10lbs. I can’t tell as I have body distortion issues that could be attributed to: my Asperger’s, PTSD and Eating Disorder issues. Maybe all three!
I’ve also called my stoopid guvmunt worker (however she is FAR from stoopid–she’s excellent!) I want to see if I can get some kind of person to come and give me in-care help. I live alone. I can’t DO anything. Just hobble to the bathroom and back. Can’t read. No TV. It’s like this thing has given me permanent ADD now! However, that may end up being shelved for a bit if I end up going back to hospital and what happens with that.
This is long, I know. At least I could get it written but it’s taken me hours. But I wanted to tell the tale. And it’s not over yet.
Okay, done this? Resty now.
And if you actually read this, TG? Well…you know.
Today may have been was the day I realized the most potentially scariest point of my life. I also realized that no matter what the outcome, I had to make every day count from today forward.
If I could.
It was the most beautiful day. So warm but not hot. No wind to disrupt the perfect moments to bask in those brief moments–the transition from spring to summer.
I pondered this idea, slowly rotating my mala bracelet (basically a Buddhist Rosary.) I pondered what frightened me and why.
I’m still struggling but I have the greatest Blessing now. I am no longer grieving a person I thought I had lost completely.
Some more encouragement. A lot more. To make every day matter. If I can.
Posted from WordPress for Android
Well, somehow I can connect to the Internet today when I actually had NO connection yesterday. Just when I felt like I had enough energy to tackle a few things online…nope! Now, I’m up and running (so far) but I have to dash out to an appt. soon. So I’ll try to at least get this up quickly. Uber-importante? Then I’ll try and get back to other people.
Last night, there was a documentary on television about individuals who had lost their twins. It was also about fraternal twins. I’ve always had this “feeling” I was a frat. I had no clue, but thank my beautiful friend P. who found out about it a few days ago and told me. Oh, I’m so happy he told me and I saw it (and kind of not?) Ouch.
No, happy. It wasn’t just about a twin that died later in life, but a twin that died in utero!!! That’s my situation!!! They are now trying to do more research about it, as hardly any has been done! It’s been totally neglected. Ouch again! And a bad pun.
I tried to contact my mother to tape it as my VCR is all messed up. I have so many pieces of electronics tethered and daisy chained all over to everything, and now this Digital Cable Box! I’ve never even tried to tape anything with it anyway, so it could be incapable period. I can’t record a DVD on either my regular or All Region one. *rolls eyes* Since I had no Internet, I couldn’t even look up anything about it either!
I tried to take notes with my broken brain as I watched. However, some people were not speaking in English so there were subtitles. Great.
Read, try to think, then look down at paper with a pen. Although, now you’ve just forgotten what the point was altogether. Improvise? Guess? Oh, crap! The person’s still talking! You’ve missed more of the subtitles! Time to do this all over again!
I did catch a couple of very important names (but missed another!) One was a writer to do with it all, I think. It stated the title of the documentary beside her name. The other? Oh, this Dr./Professor who has done so much research into all of this!
Now that I have Internet access, I am Googling these two women. Ouch for the third time.
My appt. today should be just joyful, cute baby kittens, and a really festive occasion! Ah, I’m in therapy, folks. That’s another post I’ve been meaning to write! *head desk 45 times then moves on to walls* Partly this Internet (beyond) fiasco, but much more than partly–me being too sick.
So, that’s that. Unbelievable. I NEVER would have found out what I’m learning if I didn’t see that show. As ouchie as it may be, that’s where therapy comes in. It’s biggest purpose is to deal with our “ouchies.” But with me, I was thinking of my particular case. How will this work out with all my comorbidities in some of what was said? Ouch #4!
Before I touched anything else in my unit (even molesting the Earl of Grey) I had to begin writing this. And hopefully complete it. Every slug on the planet is moving faster than I am. If I actually hit “Publish” then I may only be capable of touching a pillow.
True, Freedom of Speech is always my mantra, but “Freedom of My Own Useless Asshole Speech?” I’m sorry. Since it is, by right, my own free speech, I feel I should be allowed to have at least some control over it.
Let’s look at two of my last recent entries on Twitter, shall we? The first is abominable!
Decision tonight. May not come out right. Feel how you feel about me, like love or even hate. I will feel in manner to my health. It may seem to exclude you. Not my intent. If I remain so disabled as now a certain time may come.
Pray tell, readers. And what doth thee say unto thus?
Are you fucking kidding me??? Fine. I’m sick. I’m seriously, seriously sick. I’m obviously trying to get that point across. However, what the hell does the part about how you feel regarding me have any relevance to that?!
“I will feel in manner to my health.“ Okay, that’s maybe me trying to somehow say, “I need to focus on that.” A tad obvious as some days it’s so bad, I can’t get out of bed and I’m on a steady diet of Gravol, Valium and Ibuprophen.
“It may seem to exclude you.“ Uhhh…maybe some slap in the face if I can’t be so on the ball? That’s really mean, though!
But “exclude?” Now when on earth have I excluded anyone on my blog? Surely under these circumstances when I’m so bloody ill, I haven’t been so great with time. I would like to hope people would be understanding regarding that. But “exclusion?” No. Ain’t EVER gonna happen in PA Land.
Finally, le Piece de Resistance. “If I remain so disabled as now a certain time may come.“ Oooh…spooky…ominous…and it’s not even Halloween yet! Nice sort of bizarre “threat” or something, PA. I mean, it certainly could have been interpreted by someone like that! *slaps forehead*
Have you ever felt extremely, purely evil? Right down to the core? All that you are? Pity if not. It’s fantastic!!! Glorious. #medchange
First, note the hashtag. These were both written while I had literally just started increasing my Clobazam. That did play a role. As I always say with anything mental, and your actions:“It’s a reason, not an excuse.”
Now, it may be hard to grasp, but this entry is completely, and honestly true. Right in the moment. However, you must also understand that nothing would have resulted from those feelings. How do I know? It’s “simple.”
Everybody around here knows that I am not a violent person and my illnesses and disorders do not make me “ragey” in any way (some on the Spectrum can, for example–not to point fingers.) Throughout all of this loss of Clobazam business, I did actually feel “violent” but all I did was throw a bottle of pills across the kitchen! That’s the worst “outward” display I’ve ever had! You all know it’s “inward.” Self-harm.
So, above. Why so “simple?” After a few days of thinking, I believe it was a Simple partial seizure of the psychic origin. It seems almost certain, as I have had two that have altered my perception of self to such an incredible magnitude (i.e. I am not “really” myself.) Then, the immediate euphoria is HUGE.
Do any of you guys remember when I had a Simple partial and believed I was a form of AI (Artificial Intelligence?) I thought THAT was incredible! Being Satan’s prodigy was off the charts.