I have an instagram now … and my dad got me a new phone thats android … I had a wicked attack at work tonight and I was alone and I hated it really bad… and Ive been in premurge hell all day. 


I’ve got a house to clean, laundry to do, dishes to wash, a floor to vaccuum, coupons to clip, dinner to make and fish to vaccuum … so… no matter how much I want to vent about life… I need to be an adult and not a big baby. 

My first VoxBox!!!!


Well, Today I’m taking a break from my normal stuff… the whole talking about my life and my issues… because I got my FIRST, EVER box from Influinster of stuff to try… I know I don’t talk about it too much because this blog is suppose to be about my life with chronic illness and stuff…but because I want to be able to get MORE boxes… I have to do a blog post about it. That’s enough for me to interrupt the usual amount of rambling and talk about this!


I took this survey a while ago when I got the update saying I FINALLY qualified for one, but I never thought I’d make it through and get REALLY picked for it… so when it got here the day of the big blizzard and was sitting on my porch covered in snow I was so beyond happy! Seems like February is hopefully turning out to be my month for things to start improving in my life…. So, in my box I got all the stuff you see… and I have to much I want to say but I don’t want to say too much about it!!!


1) FAMILY SIZED BAG OF HERSHEY KISSES…. I’m allergic to chocolate but when we got up that morning Davis told me he had a dream that he had Hershey kisses and then this is in the mail… so, I ate 14 of them and made myself sick. It was worth it! 😛 Now I never want to see chocolate ever again. 

2) KISS false eyelashes! I’ve never tried them … I’m not even sure I know what to do with them. The whole … living with a movement disorder and trying to put something on my eyelids seems REALLY dangerous. I don’t know if I’ll ever try them … I might find someone else who wants to take them from me. The idea of even making an attempt for that when I cant even put in contact lenses… LOL, it’s enough to give me hives! 

3) The mens body spray I already used to attack bunny and his crazy dry elbows… and the next step is to attack his mummy-feet and those itchy looking dry ankles! The only complaint was that he said it was really, really greasy and sticky… So even after he wiped it off it was still weird… I might still force some of it on him … because I’m pretty sure that he could have body parts used as sandpaper. 

4) I also got this mask too, its  Boots Botanic Clay Mask. I’ve not tried it yet…I meant to do it this morning when I got home from work but I’m really scared to try it without calling them and finding out if they’re aloe free…. I mean, the ingredients are safe and I don’t think I’m allergic to willow, but I cant risk trying it and getting sick since I finally have a job again. I figure tomorrow or Tuesday I can make an attempt. It looks like it would be so wonderful and I want to review it too so maybe I can get MORE boxes to review.

5) The John frieda stuff I plan on trying too on the same day. I think I might give myself a DIY spa-day and just pamper myself!! Well, it’s hardly pampering … but, it will be nice to feel girly by doing my crazy curly hair so it looks pretty and less like a hot mess and more like someone did it for me. 🙂 I never really do anything to it because the heat can wreck it. This stuff sounds so great! 🙂 and I know I’m not allergic to THIS! 😀 


6) and the LAST thing that I have is my favorite thing in the whole world!!! the red rose tea!!!!!!!!!!!!!!!!!!! ImageImage


I drank the Lemon Chiffon on Friday and was so ready to RUN OUTSIDE AND GET MORE OF IT RIGHT AWAY it was so good. I can’t even stand most lemon things!!! I’ve not tried the caramel yet and I dont know why because i know its going to have to be totally amazing too. I gave a bag of it to one of the girls I work with, and I’m sending another bag of it to my mom so she can have a cuppa on us… now I just have to try it. I got coupons too and I know I’m going to use them to get more of the Chiffon tea!!!! I love the coupons….


well, thats all for me for now…I need to drink more tea… and then go to bed … working at midnight kinda sucks…. but it means I have a WHOLE DAY to enjoy with the man I love! 

 “I received these products complimentary from Influenster for testing purposes.”

a few days of reflection….

So, I was on my way home from work on Saturday I was kinda happy … I even got my first check with the new job. It’s pretty neat… we get paid every week just like it was at the food store. That’s really going to make things easier for us…Im still stressed out like nobodies business, actually … no. I’m not. This is going to sound really weird coming from me… but even though everything is behind and stuff is late and we WERE doing ok …. and now it’s all starting to slip…somehow I’m still not at the end of my rope, completely. 

The job is ok, so far no one is being too weird about all my issues…but I’ve not had too, too severe… I mean. The other girl I work at during the night is really cool about it because she’s got her own issues … but at the same time … its hard knowing i’m going to break down and hit the floor at any time. She knows what to do if it happens but its still hard for me to deal with the idea of it happening … again. These are the days I just want to be able to feel like I’m normal. I know its almost too much to ask with the way my body works …even while Im typing this now my face is totally grimaced and my eyes are squeezed so tightly closed …its only when im not punching myself in the chest I*’m typing this. It’s lame.

OH… Saturday… so I get out, depositing my check and go see Bunnykins at his job and I’m on my way out of the store and this guy in a white van almost hits me! I was so mad… like, not even paying attention. I was so mad. I wanted to yell but I had a mouth full of crispy crowns. Oh… and working at 5 am on Sunday doesn’t work for me… I totally need to get in at my normal time so I can make sure everything is done when it needs to be, I’m not crazy stressed out … and that if I make mistakes i can fix it … 5am keeps me there too late in the afternoon, (which is like, noon for me) …but we got almost everything done … which was good.  want to make sure that I always have enough time from now on… 

But, today was pretty good … I got to hang out with my mom. Bunny had to work, but we’re both off tomorrow …Oh, the problem is that I ran out of oil in my car… So I had to go get more and I was shaking really bad so I had to have someone help me put the oil in my car. I was kinda happy that there was another guy with a Honda only a model year different then mine to help me,and deal with the latch I have trouble with. I’m so glad… That was pretty awesome…


Anyway, we went to the stores and walked around and got lunch together. She doesn’t mind any of my problems…my tics were ok-ish today… my grimace is really bad and its making it hard for me to talk and swallow…and I keep punching myself in the chest. in-between the shoulder jerking and the chest punching and the constant choking and throat clearing today … but. we got Chinese and just had a good time … I really needed time with my mommy. I’ve been having lots of breakdowns emotionally … part of it was because I forgot to take one of my meds, and with the new neuro appointment coming up that’s kinda scary … I’ve just needed Bunny and Mammy more then ever… I hate going to bed and crying until I fall asleep ..that’s finally stopped, thankfully… 


so now I’m home and i’m really tired … I kinda didn’t get enough sleep I think. I was up in the middle of the night doing dishes and other stuff that needed to be done that I crapped out for in the evening. Oh well… He’s going to be home soon. Im kinda tired of typing and I want to watch tv if I can

Help from out of the blue

A few months ago I was sitting on facebook, in a group about DBS and listed to everyone going on about when their consults are…how much better they are, all this sort of stuff. Well, this was right after my appointment with that Jankovik flunky and he told me I have no hope other than all those drugs I cant get because I cant get insurance…

yep, you heard me … can’t do it. Obamacare wont cover me because I have no income either. It makes me laugh. My job also doesn’t offer benefits. I figure after a bit of time at the job I got at this other bakery maybe I can apply for that thing and maybe get it. Or, the hearing will get here and I can still get SSD. Or, at least partial SSD. Thats really all I want from all this nonsense. 

So… i left the group… people told me to stay and asked about why I was running away and I never replied. Today, I got a message from a lovely lady whos kid had DBS. We talked for about an hour over the whole thing with me … my history… everything. It was more surreal then getting the Temple/St.Luke’s appointment in the first place. She said there are ways to help someone get to the next steps in the process. It’s amazing to me that she’s willing to talk to me about this whole thing … and it’s not like my attitude is that great. She’s crazy nice…. and told me how strong I am… I have such a hard time seeing that. It meant a lot to me for her to get in touch like that, even after I left the group to not be the piss in the cornflakes.

and stupidly it made me sad. Happy, but sad at the same time…. I’ve been having this problem every night fora week… I go to bed and then im just crazy, crazy sad. its made me think I need to like… either deal with my problems or take more medication. I don’t really know what the problem is that makes me just want to cry every night while I’m in bed… but I do. I even tried to go get a hug from my mom today when I was crying my eyes out from stress today. In the end, I had to go back home and we’re going to get together this next-ish week sometime because of this.  I couldn’t even get down to see Bunny because traffic was so bad. So, I came home. 


Other than that, work seems to be ok. The other night girl is nice. I scared her with vocal tics and we got a good laugh out of it… The only thing thats really disturbing me is the facial dysto lately… the grimace is hurting… but, I can deal with that. I’m sure I have to start back on my other drugs now that I’m working again … oh, well… Oh… and the punching myself in the chest. I HATE that one. 

I got a job.

So, there’s a bakery near by… my mom found the job posting for me and had me apply for it … the job was listed as 25-40 hours, assistant bakery manager… I interviewed twice and they hired me, but not to be the assistant manager. They want me to be a baker-wholesale coordinator-General Manager assistant … oh, did I mention they wanted me in at 2am but I said that’s too early and I’d do 3am regularly… and 2am when its needed?  

I’m worried… it’s not the job I applied for … but it’s a job… it’s a good job… I have a 2 week review … and then a 2 month review, where if they want to keep me I could get a raise. I know how to do this job, I know how to do most of it … its just stuff I’ve already known. Thats the good thing. That’s where all my experience is… 

I dont know how this is going to work … im going to try my best… I’ve never gotten my Mary Kay off the ground (hello, more failure in my life) … 


the only decent thing going on is that my dysto isn’t too bad lately, and my TS could be worse… I made it through my whole first day of work without an attack even if I did get home and sleep through the puppy bowl AND the superbowl … I just had an attack when i got in the car.