the problem with having a public journal is that I can’t talk about all the things that are important to me. There are some things that the world can’t really know … especially if it means I’m going to hurt members of my family. I’m really overwhelmed…. I have a lot going on … I need things to change…

envy isn’t a good emotion


I know I’m human and it means that I should be ok with things like this … like I should be able to just always be the adult … and sometimes just like … let all this stuff go…. but I can’t. I get to see all my friends getting to the point where they can have a prosedure that might cure them … and I don’t think I’ll ever be able to get it … I hate this feeling… 

I cant even remember the last time I had something to say in here…


But I’ve felt like crap for a few days … and the thought of posting when I’ve been mostly a wreck wasn’t going to work.

It’s been almost 9 days. 9 days of nothing but denials on my Unemployment claims… denials on all the jobs I’ve looked for… denials on my SSD hearing and more delays… denial after denial … stresser after stresser. and not posting is bad for me. Not talking is bad for me… 

and I don’t know what to do about it. We’re caught between the rock and hard place of all my problems. Am I legitimately sick, or not. Is the constant sneezing in patterns of three … hacking in patterns of three. throat clearing … am I sick or not… is it this or not… I’ve been twisting and twisting the past few nights where my legs are in so much pain I’m awake in the middle of the night because of it. 

 

Ive really had nothing to say … I’ve wanted to say something to say … but… sometimes being mental just makes me want to be quiet 

The morning at OVR.


Well, the one good thing about a meeting at 8:30 is that it’s done… right? Something like that… She feels the way I do about this whole thing. Nothing that can be done about it though. She’s also worried about the whole “me not getting EUC because I was fired even though THEY freaked out…” problem. Found a few places for me to apply to …even if one of them I went over to talk to today …even though the lady wanted to talk to me right away she couldn’t hire me because I live in the wrong county. That part really sucked. They get their funding from Northampton, so they cant hire (ha.ha.ha, I actually typed the word fired first… proves where my mind is) someone from Lehigh… She said she wishes there was something she could do. The next stop is a part time position with another shop in the mall… or a few other places like that. 

It’s been agreed… part time jobs… no more full time attempts for me. We need something little for me to do just so we’ll have an income to help us get by. Bunny is all for that too, so is my mom. So, I guess that’s 4 against 1, right? I know its the right thing to do. It’s the smart… healthy… thing to do. It still feels a bit like failure as I look at all the people that I know, and everyone woh can hold down real jobs in fields that they really wanted… and then there’s me.

We went over a lot of what the problems are with me when I’m working … Sometimes there’s problems with actually seeing that I do have some pretty major disabilities… sometimes it can look like I’m either CARELESS, or HASTY, or NOT PAYING ATTENTION … when I have comprehension issues… and other organization issues that people think means I’m just doing whatever I feel like.  When really, I’m struggling with things. No one can see that…. or the constant questions that I have …it’s part of my problems. We’ve decided that the Tourette’s, and the Dystonia is almost the least (I know, isn’t that a funny way to put it) of my problems …right now we need to focus on the food allergies and try to find a job that we can get me that’s not going to poison me … or anything else like that. my Mammy and I talked about this too, we went over all the jobs I’ve had and all the problems that I’ve ever had … and it all goes back to my neuro/mental/emotional issues… or my learning disabilities…

She also really wants me to push for the service dog. I sorta have that in progress… sorta…well, not really. I’ve not started the applications for them … and I’ve not really done anything. I’ve sat here waiting until I get to my neuro appointment in March… I’m in-between doctors… I have to get my release papers from the one to the lawyer too … not looking forward to that one either.  just… scared…How sick is that…? It’s just another appointment. It’s just another day. I’m still scared after how the last appointment went.  

…and speaking of Dysto… it’s been coming back with a vengeance again. I don’t know why it cant just go away and leave me alone. Lately it’s been from my knees down… I’ve not even been able to get any decent sleep at night because of my knees going one way and my ankles and feet going the other. It’s AWFUL… and there’s nothing I can do. We’re out of Benedryl… I don’t have anything else I can take to try to get the edge off… I don’t have insurance so it’s not like I can just refill a PRN…. I don’t know what to do about it other than deal. I can deal. It’s like the nerve pain I’ve been getting shooting up my backside and through my middle. I can’t do anything about it other than whimper, and keep going. Even when the pain is so bad I cant even sit in my wheelchair, let alone do anything else. 

 

Well, I spent the past few days feeling sorry for myself again. That’s been something… right? I feel like I need to kick myself in the ass and just be over it, but its not working. I’m tired of freaking out over money… I’m tired of being scared and stressed over this adult stuff. I wanted more for my life… for our life… then this mess that we’re in. I could have gotten more done today… I mean, I spent the whole day yesterday sitting home waiting to see if we’re getting a plumber in, or if we could get the landlord to show up and unfreeze the pipes… Yes. We have water again… thankfully… 

 

So, after not sleeping at all from stress last night… and getting a 4 hour nap in … I think I’m almost ready to be done with today…Tomorrow is a new day … I have to try to get things done but … we’ll see…I just wish I could get this stress Rosacea under control… out of all my problems its really sad that …well.. this, stupid, pathetic cosmetic thing is what bothers me the most. I hate how much it hurts… and how bad I look. I know, pathetic, right? Time to go play some Doctor Who: Legacy… and … well, Oh, right! I have to pack Bunny’s lunch for tomorrow…. and figure out something to do… 

I totally HATE tourette’s … and being hopeless


There are always so many things I want to say … but I run out of times to talk about it. With Davis being home the past few days too I’ve not wanted to post … I like spending time with him instead of sitting here talking about all my problems. We had a good few days. Even with all the snow. I do love the snow… so pretty… and we got to see our “pet” bunny… I love seeing her leap through the snow… so cute. Baby squirrel is adorable too but he’s not as cute through the snow, he just looks terrified. 

 

I do a lot of things to get freebies. This is the one part of my OCD that I really can appreciate and really almost like having it for. I can find a goal and work towards it. I love playing on Swagbucks and other sites like that. but, in order for me to do that I have to sign up for all sorts of other offers … One of them was for The Keystone Clinical Research Center. They’re doing OCD studies, so I figured why not try to sign up for it. With all my problems … maybe we can get something under control for once. So, the assistant called me to get information and was happy to talk to me… until I told him that I have TS. That stopped it. He appreciated that I can give my information in a concise matter to save them time … but… the researcher would have to call me back. and he did. I was shocked. 

Truly shocked. He not only called me back yesterday to discuss my case, and to let me know that with my Tourette’s that there is nothing they can do to help me… but he called me back again today too. I’ve never had a researcher call me back on a weekend to discuss with me other treatment options that might become available. He couldn’t get out of his head how hard I try to do things, and how much I have working against me. There’s no reason for me to feel like a lost cause… even if medicine hasn’t gotten to a point where I can get real help. 

He said most people don’t’t want to work with Tourette patients because we’re so complicated. there are potentially 4 parts of our brains effected and then there’s no guarantee that we’ll even respond properly to treatments… He said that my dysto would make me great for a few of the trials too, but with the TS component… not possible. and since for the past week the rigity has been the worst part for me. my neck keeps getting stuck over to the side and it pulls something fierce. and I’ve had the horrible stabbing up and through my backside. god, it’s so awful. it’s so bad to the point that I wasnt even able to walk for a day and a half… and even when I was able to try to walk it was like I was being stabbed through my body with hot irons….

There’s a new medication that’s in progress and might get approved this year called BITOPERTIN that works on the glutamate receptors in the brain. It’s in development and really seems to be working on a lot of different fronts of disorders they originally thought were Dopamine in origin. I liked this guy. He talked to me like I was on his level and not like some idiot … and really let me get my questions out … and listened to me better than the last neurologist did. He told me all about the pharma company and their compassionate use programs… He thinks that I should try back for NIH…and Kayley mentioned something she saw about Yale…I’m not sure what I think. I really, really, really could use the money. My mom hates when I sell my body for science too… 

Bunny says that I’m letting my conditions turn me into a shut-in too. He thinks I need to try to get out more, I see it happening. Even though I’ve not had any severe attacks lately I’m terrified of going out into a public area and having issues again…Sometimes I feel like its not that kind of things, its mostly that I don’t want to just do everything… and that if he’s out then he can get the mail or something… but then he tells me that its because i’m scared of going out … or i’m a shut in… what do I believe? My mom tells me that its naturally part of being a woman..that I want him to do more than he does… but he tells me that its something turning wrong with me.

Other than that… there was some stuff I wanted to talk about too, but because i was too lazy to do the post I didn’t remember it… but… I think i’ll try harder soon… or not… i really just don’t know how I feel about all of this 


Ive been up since 2:30… just lying in bed wondering why EVERY night I find myself in the same place … is it because I need a nap in the afternoon… well, partly… when you get up after 3 hours of sleep you’re GOING to be tired…Im not thinking about anything stressful, I’m not sick (although my allergies are a bit of a chronic nightmare) 

Heck, even my body… for once… isn’t a total spastic, rigid mess… I’ve been having some dystonic activity even before I went to bed last night … but it was in my neck… my NECK for godssake… so… I guess Im going to sit here quietly for a while… drink some tea… try to get myself ready to settle back in …

It’s the New Year (so what does that mean for me?)


Oh wow… it feels good to be sitting here and actually trying to say something … instead of trying to fill everyone in on whats been happened in like … txt message size. I just hope that 2014 is sooo much better than 2012/2013 both were. It’s been a rough few years… BUT, I think that Bunny and I have had a pretty decent new year. A night full of snacks, and today we had free coupons to the steakhouse and we got to go there… it made me happy…. I really like that place. He does too… but you know. 

Like I’ve said a million times … I lost my job on the 19th. It was one of the biggest shocks I’ve ever had … It just… it was heartbreaking because I loved it… but after 2 weeks I’ve gone through all the stages of grief and loss… got our bills paid… got back to my baking, cooking, making everything myself … oh, and couponing… cant forget the couponing. 

It’s sad to me, I liked working … but we see now that it’s just too dangerous for me to be out in an environment that I cant completely control. It really bites. It actually makes me feel worse about myself than the actual Tourette’s/Dysto does… My allergies are so stinking rare… i just hate it. Everyone wants me to find a way to NEVER have to use the epi again… believe me, makes all of us. I don’t find it fun either. I just hope that my EUC gets approved again… 

But… Like I keep getting told, let that stuff go out my rear end and just enjoy time until I get to my next OVR meeting and oher stuff… so, Bunny and I went out and used our gift card to Logan’s today and got for **Free** my first taste of Filet Mignon. I’ve never had that before!!  It was like butter I loved it! …and free… totally amazing. and free onion petals too!!

 

Other than that… today was a pretty good day for us… We watched planes and my tics haven’t been awful… even my Dysto hasn’t been bad… its weird. I wonder why. I almost think its because the snow is coming… usually when the weather is about to turn I have a lot of good days… well, I should get back to working on my shopping list and my coupons… we’re getting a mega snowstorm … so i know i’ll have time to do all this stuff… but im in the mood tonght.. so why not.