PANIC!! (at the ShopRite)


Today was a day of mixed pride… and panic. I finally went to go get my PPD for the new job… and i’m really, really proud of myself for that. Most people who have had the unique pleasure of dealing with me know that I’m a gigantic chicken. I can’t hold still, I freak out over everything… and I hate having shots or needles anywhere near me.

Too much stress and drama as a girl… 

But, today, over at Building 5…at the nurses station… they managed to give me the injection on the first try without any problems. I’m so proud of myself… this is only like the 3rd thing they’ve ever been able to shoot me with that I didn’t freak out over. I know I’m too old to have a breakdown every time someone comes after me with a shot… and after having to epipen myself back in October… kinda puts things into perspective. 

So, I go back on Saturday… then the next step begins … and hopefully by 10/1 I might be part of the working world again… or something like that. Something.. I’m hopeful over this still… and kinda pissed the other place didn’t call me back when I was told that they would. I didn’t want to work for them anyway… but its just rude to not return calls. 

um… other than that… I hate the food store… and I’ve discovered that I really can’t go alone. I do my shopping in another stat, it’s cheaper for me to cross the boarder and go into jersey to shop at ShopRite. The prices are better, the people are nicer and blah blah blah. No one cares about all that stuff… it’s just a reason for me to cross the boarder and do something different. So, my mom and I went food shopping … wandered around the mall, talked, went to walmart … I had a small panic attack because it was busy …

…and we went to ShopRite…that store to some people wasn’t busy, but to me it was a busy nightmare. The stores around here aren’t that nuts all the time. I constantly felt like I was on the verge of a panic attack trying to do my coupons, get around the store, not smack into someone … not fall on the floor in a giant ticcing attack all curled up by the meat cases…

Not cry when I see my mom get so far ahead of me and i’m trapped in an obsessive ritual of going through each of my coupons, trying to find the product… counting, recounting, counting… putting everything in the cart the right way… cold in the back left… reusable bags, front left…. meat, back right … purse & list & coupons in the basket, purse on the bottom of the pile… produce over purse… if anything goes wrong… i start to lose it. 

I was in the checkout … my mom checked out first … im putting everything on the belt and already freaking out about money… I’m already starting to get the sick feeling… my arms are tight, my toes are curling under and i cant get them to move (even worse than they were all day so far) … i start leaving things off to the side… and then this woman comes up behind me … They start to check me out … i have my bags, coupons, bonus card, everything else … and then the total starts getting too high … the person at the register is moving too fast… i don’t have the money… I’m starting to panic, i cant breath… my chest is tight… my shoulders are jerking and my face is contorting more and its getting more and more obvious… I have to reshop things… i start counting coins …

“CAN YOU HURRY UP PLEASE, I HAVE TO GET MY KIDS FROM SCHOOL”

… and i’m starting to cry, I”m upset … i dont know what to do about it … my mom keeps telling me its fine, the other people from the store who work there are coming over to try ot help me feel better and to make it feel like no big deal… the line is getting bigger… my anxiety is going up… to many people… I’m slow and poor… I’m $27 short… the blond lady behind me picks up ALL her things… reloads her cart… and tells the people behind her to move and goes to get another line in a huff… and i start sobbing…i’m hearing voices in my head telling me about my inferiority… about my disabilities… about how im broken… my body sucks … I want to be normal…

…and my mom picks up the $27…so i’m ashamed… 

and we get out of the store before the blond lady even checked out … By the time i got home after that it was all too much for me … every part of my body hurts … i’m cramped in so many places I cant take it … the auras are incessant… i’m having floaters in blue, green, black and purple … my ears are ringing…  i’m starting to feel better now… its been hours…i mean… it’s not like ‘better-better’ … i can hardly walk… i wish i had something to help me…

but the pain is still here from me not taking the stress well… and I only had one attack today… it was after I got home…. so now I’m going to bed and loading myself up on drugs so maybe i can sleep. 

There is more stupidity and ignorance in the universe than hydrogen … and it was all in one room with me….


Well, if you read my Facebook, you already heard about this … or at least part of it. Maybe some of you even know that I potentially have a new job! Very, very excited over it. So, after a million interviews and other things, we did the pre-employment paperwork last weekend and I made the appointment for my physical and evaluations and stuff… and my TB/PPD tests. 

I had a lot of choices on where to go, but there is a clinic across the street from my Neurologists office and the gigantic hospital that I always go to… So I thought this was going to be great. Well, after leaving in plenty of time … there was no parking… The parking deck was falling down so it was closed … and me ( with my ‘moves like Jagger’)  so I truly had to walk 1/4 of a mile to get there (with how I walk and how bad I shake…that was awesome)… so, I was suppose to be in building 43, but I had to park down by building 57!!!!!!!!!!! I got there… I check in… the lady at the desk was beyond amazing… and I answer the pre-screen questions and stuff… get my paperwork … sit down back in the waiting room…

So… by the way… I AM ticcing pretty badly at this point and shaking, and my shoulders are jerking and I have lots of vocals too… the woman just tried to make sure that I was ok and had anything I need. It was really sweet.  So, like I started to say, I take my paperwork and sit down in a seat against the wall … there are other people spread out all in the waiting room. I picked where to sit because my Echolalia was pretty bad, and I wanted space.

 With the beeping of the construction equipment outside, the squeaky hinges on the door, the sirens on the television… and of course I was jerking and shaking and stuff…I kinda felt like a wreck and was ready to have all this over with. 

OH…and the TV had on the whole thing with the DC naval shooter… But I sit there with my paperwork, and listen to this “forensic Psychologist” and the interviewer talk about the problems with mental health awareness and health care… and thinking that they’re all full of shit … Even the women on television was saying how she doesn’t want to get too close to people like that. I stopped paying attention. The man directly across from me, on the opposite side of this GIGANTIC waiting room was giving me the hairy eyeball … 

 

…at this point I’m just on my tablet and MINDING MY OWN BUSINESS

…and one by one everyone in the waiting room moved to the FAR SIDE OF THE ROOM AWAY FROM ME….

 

so, the couple, the solo guy and the two young ones start talking… and are all talking about how “they shouldn’t let people like HIM and the girl over there” out without someone watching them … That’s how people get killed. 

So, of course I had a silent fit… I sat there… ticcing… and feeling awful for myself… and like I’m a freak…and starting to get really angry…mental illness isn’t the problem with me, I have many things wrong with me. I have psychiatric issues to go along with my neurological problems …but dear lord if I could  have opened my mouth and said ITS IDIOTS LIKE YOU… LIKE YOU WHO MAKE IT SO IMPOSSIBLE for people like me or others not only to get help, but to be able to open their mouths and say “excuse me, I have a medical condition…” and just be nodded at, and then ignored like everyone else. Just imagine, if you’re annoyed by me and it was only 15-20 minutes… imagine how I feel living like this every day for TWENTY YEARS

The nurse at the reception desk came out and had a fit about it. Everyone being closed minded and STUPID and RUDE… The nurse  back over to me and said they’d take me back right now … I’d have to wait for a while longer for my appointment to begin but she’s not going to stand for people being disrespectful for no reason, in a hospital setting…and that I’m so adorable…Oh, but the hospital has Wifi… so I was mooching off my neurologist office to play candy crush (Level 208 baby!!)

The doctor and I talked for a while later… she took all my information and they want me to come over for grand rounds to do a presentation on Tourette’s and Dystonia. They loved how informative I was and how I had no problem articulating it in an adult, professional and medical format… and that I knew the important things and where to get the study information. So, that’ll be cool when it gets set up. Oh, I passed the physical… and the activity test to make sure i can safely do stuff. But, where they do the test for the physical stuff is in the rehab facility… no one cared. Patients and everyone was just like … no problem, whatever. 

So, other than the bullshit… Things were ok. OH, and when I got home… this is what I found in the mailbox from DSW shoes! OH, and a very sweet note! Image 

 

and my bunnykins had his appointment today for all the stuff I’ve not been talking about. HE IS FINE… they didn’t find any bad stuff in him. Poor thing isn’t feeling well now but he’s healthy … that’s all that matters! 

 

Laundry is done … dishes are done … now i have to do coupons and a few other things… Life is pretty good… oh, and I need medication… lots of it.. 

When Anxiety turns into embarrassment…and other adventures at Kohls


yesterday was fun so I didn’t get around to saying anything about it.  But we went to an apple orchard… And it was with a Tourette’s syndrome group which made it even better.  Actually, it was just one friend of mine and her whole family and us… well, the orchard is well over an hour away so it was really fun and I got so much fruit and vegetables and everything else.  I just have to figure out what I’m good to do with it… Lots of jam, and lots of jelly! 

 

today I didn’t think I was going do anything though, I … over did it yesterday …I had a lot of fun, and I ticced my brains out and it was so painful and overwhelming in places… but it was fun.  It was so awesome….and I know that I have so much womans work to do today… the house needs cleaning (I did it in an hour-ish of frantic cleaning) and the laundry need washing (I have tomorrow) … and we have hardly any food in the house… 

…but I had sooooooo much fun with Sara and TSA-EPA. Her kids make me really want more kids of my own! I know that Davis is all for it… We just have to start trying 🙂 yeah, I know with my health, and everything else……. but still… Half the fun is getting to… Well… You know! 

so I’ve been shaking really bad all day… Started the day making phone calls and some people I was calling had trouble understanding me because I wasn’t clear enough. I had to try a lot harder…

But,  I have to have doctors appointments and stuff wednesday… But my mom called at like 8:30… And we decided since I don’t have the doctor today or anything else that maybe we should get together and do something… I’m all for that.  I like hanging out with my mom! originally we thought we were going to dart the canning with all the stuff I brought home from the orchard… We went flying! she’s offered to get me a new pair sneakers… And we went to 1 million stores and we just couldn’t find the one that we wanted

now were at the part that the title is about… We went to Kohl’s because she had a coupon and there’s a sale… And they had a million pairs of shoes … but not one black on black pair of chucks … like… just didn’t have my size…  so we are going to order them off the kiosk…instead of waiting until we got home… But the kiosk wasn’t working and we call for help from I don’t know when the ladies that works there… So we’re trying to get everything to work and these two older women come by to help and they’re like right on top of me…they keep pushing and telling me everything that’s being done wrong (The system was down) and I was scared… because the one was on the one side, the other was leaning on me and pushing the kiosk buttons, my mom was on the other side… a cart was behind me … so finally I have to step away after the 4th time they started to do and redo…but everywhere we went in the store they kept giving us a different answer and to go somewhere else … I could stake it… I stepped back and started crying… it was so too hard and so overwhelming… it was like being in the twilight zone! After 45 minutes and them checking behind the desk and saying they have a pair in the back… then they don’t then they do … then the credit card was expired… then its not… then it is… then its not … had them the shoes… i look… they look… I ended up crying and hyperventilating because I couldn’t take it!!!

Yes… they were out of stock… no… I didn’t get them..but, I found purple ones…. chuck heaven

The comfort of anonymity…


O-M-G …. I know second daily today… I go couple days without doing some than out of nowhere I do two! I should’ve been doing my woman’s work today… but instead after my ranting and raving I ended up going over to the mall… Yeah, yeah, yeah, I know… Mall on a Sunday with a disability never good idea.  And I went alone.  I had a coupon to go to this store that I love, L’Occitane En Provence to get a mini facial and that was really nice.

The whole thing with the title is that I used my chair today.  Yesterday was a really bad day and I spent so much time having fits, and all sorts of jerking and contortions, and today I’m still having a lot of different spasms.  Specially my face, really bad grimace going and squeezes my eyes shut.  Not to mention it hurts the corners of my mouth and my tongue. I had a lot of shaking to today.  The shoulder and torso jerk that are the ones that cause all the pain in my back.  So, you put those two main things together and I’m not exactly a happy camper… So this is another Dragon speak post.  I really like using this thing, especially when I’m having… having attacks. a really short classifies as an attack if it’s just a whole day of crap.  And recently it’s just been whole days crap.

 

So I went to L’Occitane and they were pretty good with the wheelchair with me and being patient when I was moving and stuff.  I know a lot of samples.  It was kind of nice to feel pretty I don’t do my own makeup very well because of always moving.  And I always poke myself in the eyes with the mascara and with all my brushes.  It was nice to have somebody explain things to me again because I don’t remember a lot of the stuff they tell me my memory is short.  My attention span is bad and I like when people do it for me because then it actually looks nice instead of like crap… I’ve also kind of listen to some of my mom’s advice (yeah shocking) and I had to get some kind of tinted moisturizer to make my face look finished… you know that whole stupid idea of natural makeup vs. looking natural …she actually has a point.  For once.  

When in my chair.  There’s a lot of mixed reactions.  

Some people recognize me from being able to walk around shaking, other people recognize me from using my crutch, and it’s also hard when I’ve had days room with somebody and they see me being able to walk normal.  But the good thing about being in a chair is that no one seems to see me… I can have my normal issues and nobody really cares because if you’re in a chair  It’s almost assume that you have reason for it. I actually felt like I was able to enjoy my time out so by people without being afraid of how I looked, and how much pain I’d be in later… I’m not totally exhausted either that’s a relief  In and of itself …because that’s my biggest bitch right now and one of my bigger fears is that when I get a job.  I’m constantly exhausted from trying to hold my body together and from the medication.. How am I going handle it? there’s not much I can do about keeping myself awake if the clonidine is in a knock me out no matter what I do. I just like getting to be invisible.  I finally get to feel like everybody else who’s at the mall that nobody sees.  I don’t have kids laughing at my vocal tics.  I don’t feel like people are staring at me because my arms are jerking out at odd angles or my legs are misbehaving…or my face is so contorted that it’s painful and I can even talk.  I’m just another person at the mall as part of the scenery…. Sometimes I wonder how much people take that for granted.

 You know what I mean? the ability to just walk around, or go somewhere and sit in no matter where you are. you can go to any dentist that you want in the state because you don’t have to worry if your wall fied to work on people with disabilities, you can apply for any job that you want and not have to worry about their record of treatment for people with disabilities or if they’re equipped to deal with you, work there patient enough to work with you.  You can go out anytime, anywhere, anyhow and not have to think about taking medication, or having it with you, or having attack. go to any restaurant in the mall food court and not have to worry about food allergies… Or try on perfume, potion, makeup and not have to check for jojoba, or Aloe, or parabens, or some other random oil, extract, scent… That’s going to send you to the emergency room and need the EpiPen…

My wheelchair grants me freedom… People are cautious… People ignore me… And in a sick way I love it.  I’m always grateful for days that I can get around on my own 2 feet… Because I know that that’s not guaranteed for any of us fight.  I also know that when I need my chair.  I am always grateful to know that it’s in the back of my car and I can just blend into the background. 

 

Well, it’s getting to the point that I really need to trying get this woman’s work done around here.  This house isn’t clean itself… So I think that’s enough for me right now.  Hopefully tomorrow will bring more good things… And I might find those God damn earrings that I lost on Saturday.  They were new too!!!! Dangily sonic the hedgehog with Swarovski crystals… so crap…

 

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When life gives you lemons, make grape juice (and then have the world wonder how you did it)


well after the daily fail from burning my hand,  I think it’s about time that I do real update…what I did the other day was I was draining a pot of spaghetti for dinner and I somehow didn’t get my hand out-of-the-way in time.  So, I spilled a big possible hot straight onto my hand burning my entire middle finger and most of my palm… so, even with Dragon speak that doesn’t make we want to do much other than piss and moan…so I did! With an ice pack, and a lovely EMT husband taking care of me :). God, I love that man.  It’s doing better now.  I didn’t do too much with it.  It’s been covered with that cause with the silver in it.  Now I’m not as crappy as I have been… I know shocking right?!?!?!


Thursday… I had a dentist appointment and it’s the dentist that deals specifically with people with movement disorders and all sorts of things like that. last time I was there he was able to do five fillings and I took… um… 50 mg of Valium?? maybe 42… I don’t remember.  Anyway, he still can’t get over that not only was I still wake I was relatively lucid.  It was just a cleaning and one of the good things about going to see him is that when I go It’s like a support group in the waiting room. there were people who had essential tremor are there other people with disorders, or anxiety, or panic disorder… There’s no reason to ever feel like you’re a bother, or different even!! the one guy with tremor that they see actually had the deep brain stimulation surgery and it was really great to experience somebody else with that and the opinions of another medical, well, dental professional working on a person who had that surgery. I keep trying to talk myself out of it… Like I don’t needed that I shouldn’t want it it’s major brain surgery but after seeing how well it worked for other people I know you got there lives back…forgot lives period … It gives me a bit of…um… I guess it’s brain envy.

no, it’s not crazy as much as I want to think that it is… I know so many people at this point had it done to varying degrees of success and failure… And I understand the risks because it is major surgery and I see what can happen… I think it  would be nice to know what it would be like to not have such limitations based on me by my body…to know that I can go out to test drive a car, or do the same thing in public two days in a row…

Speaking of that… Since I’ve not daily-ed in a while… I think I FUCKING hate Walmart…no joke on that one… None-at all.  I made the same mistake every time to my… Well, the majority of my medication goes to the Walmart pharmacies right now…the cheapest place around it.  Most of my medication, but it’s a zoo… Full up petting zoo…standing in line at the pharmacy and there’s alarms going off, some kid that sounds  like she’s being murdered, probably over a Barbie that somebody won’t let her bring home…I don’t  think I was in their 15 min.’s before the screaming, chirping, squeaking… It just got out-of-control it’s I sounded like a bat practicing echolocation… That’s how bad the vocal tics got… Poor people standing in front and behind me too…. I really was echo locating then I walk out of the store while I am still echo locating and all the siren start going off.  So not only am I beeping… But now I sound like a police siren beeping in between all of the echolocation and I can’t find the car…. I really almost sat down in the parking lot and just started crying.  It just didn’t seem fair.  All I wanted to do was pick up three medications… N/A end up having a complete breakdown on temper tantrum everything because my body just can’t handle the stimulation… I got to tell you… that… sucked… I didn’t have any extra medication with me in the car.

I didn’t think I would have that big of a problem…. And I know I should be prepared for anything.  But it doesn’t seem like I should have to hide from the world because my body can’t handle so much stimulation… But I have to protect myself too… Sometimes I feel I can be better if I lived on a farm… away from everything… with just my sheep to copy me…

well, that’s a pretty good segue… I had a job interview every day last week from Thursday through Sunday… And they’re really nice.  And like I said in the little post about that.  They really don’t mind any of my problems.  So here I’m thinking that might be the right thing for me and I get a phone call from a place that I was considering as defeat… I go over yesterday in quite a foul and sour mood… just to find myself incredibly, incredibly wrong.  Everything I expected and anticipated turned out to be wrong.  I thought they were going to offer me a position as a part-time cake decorator, and instead they were discussing a management position with me.  That’s full-time.  When does that happen?!?!?!? especially to me?!?!?!

Everclear said that one best.  “I don’t trust luck when it comes to my luck”

it almost makes me feel like the unemployment running out isn’t the end of the world… That ran out and I only got one week  of pay.  So we’re in a much tighter position than I wanted us to be in… I had quite the breakdown over it.

it just hit me like a ton of bricks…  I don’t think I should use the word breakdown so tacky … very tacky… I still haven’t finished recovering from the one that I had and I feel like I’m already joking completely about it …I know that’s my way of dealing with things.  But I think that maybe I should stop with that… It kind of makes me feel sick inside thinking about how far gone I actually was… I mean, I just found out yesterday in the car that Davis thought I was going to jump off the eighth street bridge.  I was so messed up… Yeah I had no idea.

were still going ahead with the disability paperwork… Even if I might have some kind of job because we don’t know how my mind or my body is going to hold up… I could try to do this job and then get sick again… I’m terrified of that personally… I want to believe that I can do it that I can do everything… I know that I can’t… But I really want to be able to try and help support my family.  We have a lot of things going on right now that make our life up in the air… Stuff that won’t be resolved until October at the earliest.  And I really can’t handle the idea of… Of not being able to do something more then cooked meals and clean up…

I read had a lot more to say in here… But after sitting here for almost an hour just talking this post out.  I feel like I can leave something for later or for tomorrow, or for never.  I still of water self-doubt… I still have so many questions about myself and my abilities… And my disabilities… I question what I can and can’t do to the point where it’s easier to hide inside my house than it is to go outside and try to face a world where I could be okay 1 min. and not the next… The question relying too much on my wheelchair when I’m alone, I question using a crutch or getting forearm crutches so I can feel secure…. A question how much of this is in my head, how much of this is that I’m not recovered from my nervous breakdown, and how much of this is that need from when I was a child to get attention… I believe there are so many other better ways to get attention that there is no reason to do something like that… But… I struggle with myself so much.  I struggle with my own pride… And the pride that I get from my father about pushing harder and putting out the right image… And I struggle with myself and that little voice inside that tells you right, wrong, good, bad… but if I go out today it’ll be with my chair… If I go to the mall today and do exactly what I want to do… It will have to be in my wheelchair.  Because I cannot mentally or emotionally handle all of the stimuli… And I used to be able to do that and it’s hard to see that I’ve deteriorated… And then I question working, but I need to make sure that no matter what happens if one of my worst fears happens to come true in a few weeks can i try to support  our family.  Can we still have a baby… can we TRY to have a baby… can we buy a house? were getting the mortgage preapproved this week… So much to think about and be grateful for… And so much to scare the holy goat-snot out of me.

I’m exhausted and I’ve only been up four hours…so I think I’ll take a short nap before I head out and go about my day… Potentially more later…

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