a job that doesn’t seem to care

Well, the past 3 days have been really out of this world … On Thursday I got a phone call and a pre-interview for a job…Friday I had an interview… Saturday I had the kitchen manager interview … and then tomorrow I have the ‘shadowing’ portion of the interview…then after that if things are still working out I have all the screenings, testing, and checks … and hopefully, maybe, if I’m lucky I might become employed again. I so hope so… YES… I’ve never had a process like this …go this way… like… shocking. It almost truly gives me hope about it.

And, when I was talking to them, no one of them cared about the issues with my brain at all. They were fine with it… They don’t mind all of my problems because I have experience and they’re still happy to talk to me. That’s so not something I’m use to having people say to me. It’s really hard to accept that anyone can really be ok with me… and my issues. it almost gives me hope for humanity sometimes. I even gave them all the information for OVR and they even let me know how unnecessary that it’s going to be for them to have it.

I talked to my lawyer again on Thursday too… got some updates… it’s starting to look like the answer for my life is going to be next spring. .. So, hopefully things will get pushed forward…but I don’t know how this is going to work with me trying to get a job to support the family… She really appreciated me this time … I gave her all the information I’ve collected on PPRX and LVHNRCC and a few other things to help her other clients. She said she hopes that I finally get some luck… because I did a good thing. I really hope so too… right about 20 minutes after that conversation I got the phone call about the pre-interview!

um… another good thing is that once the paperwork gets here we might actually get pre-approved for a mortgage through PHFA, they’re the people who work on helping disabled people get houses. I did most of the work all last week when I was pretty quiet.  I did so much time on the phone, but we have the credit score and that really…for the first time… makes me believe that it’s going to happen. and PHFA also will help in making sure that the house is fit and accessible. That makes me so excited.

Davis and I had a good day yesterday too. we went out to just wander around… I think I should have used my chair because today I’m in a lot of pain… I really want to call the neuro and see if I can get some baclofen for the pain I’m in. I’ve been having crazy contortions lately…


20130831_25 this is how my hand has been since about 4 this afternoon. Really, really painful … I had the ones in my back yesterday too… the ones that were so painful I almost wanted to just give up and cry.  I wanted us to have a nice day too… and we did. I got to spend time playing with a puppy (that was some great therapy for me) and I didn’t even copy his cute puppy sounds… and we just had a lot of fun.

Now I need to try to get back to my coupons, dishes, laundry and other boring adult stuff that should almost be done before I go to bed. Tomorrow I “work” for 2 hours… then I want to try to get the rest of this stuff done. Hopefully tomorrow I’ll feel up to getting a few more things done. This morning I tried to get up at 6 to get work done but I just was unable to do it. I felt soooooooooooooo sick… I’m glad I kinda pulled it out so I could get to the interview, but I wanted to make sure the house was put back together already… I’ve been so lazy lately with all the pain and things.


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Missing in Action.

well, I’ve been missing for a little bit and it’s not that I’ve had nothing to say.  It’s just that I’ve been busy.  On Sunday, there was the living well with disabilities conference and Expo 2013 out in Lancaster.  My mom and I decided go together because it would be good for me to see how I can improve my life  since there’s stuff wrong with me.

sometimes I still have trouble adjusting to the fact that I do have something wrong.  I mean I’ve spent my entire life trying to… Pretend like there’s nothing wrong and just get around it and I have seen over the past 18 months that that’s just not true that I need to except my own limitations.  That’s not flipping easy!!! 

so the Expo was absolutely out of this world amazing! I learned so much and saw so many people that really were like me or respect  me … or are worse than me and I fit in perfectly! Um, I went to the booth on housing and now we’re making progress on improving our life and our living situation.  I got a lot of information on it why men and waverers and things that can help with or without my SSD going through… I don’t know what’s going on with that.  My lawyer doesn’t seem to like updating me even if there’s nothing to say and I called her today left and a message but I don’t know if or when I’m getting her back from her… I don’t know what to do with her have tried firing her budget times to but she’s… doesn’t take no for an answer. I guess you have to have more balls than anything else to do that job… 

Image <-all my handouts

so as other stuff going on.  I can’t really talk about… It’s to private and it’s killing me to not be able to talk because I can keep a secret to save my soul. that’s just another one of those wonderful things about me. 

um… Living rooms painted as everybody saw it wasn’t my mom.  I never got it done.  The curtains are almost done which took forever because I  don’t understand anything and I’m dyslexic and it’s hard to follow directions…but for the first time ever I threaded a Bobbin … oh and wound it too … And even threaded the sewing machine all by myself without having a mega fit.  So, really big achievement for me.

I don’t know… I look at the little victories that are things that I think people should have been able to do… That I should’ve been able to do… A long time ago that I need help with.  And I realize how dependent I actually am.  It’s really painful because everybody thinks a you want to grow up and be able to be independent and provide for yourself, and be an independent woman.  And that’s impossible for me.  I always need somebody to help me forward to take, were to do the things that I physically can’t do when my body just randomly decides to crap out on me.  I’m afraid of what it somebody else that I depend on craps out.  How will I be able to be strong and powerful, and brave.  And… And… And be a provider when I’ve always had to be provided for and I think that that’s a legitimate question for somebody in my position right now,

I think it’s a legitimate question may be for it be in the position of chronic illness.  What happens when you are facing one of your worst nightmares… facing it down like the plague…


I don’t really know what else to say today… I…um… You do too much other than be on the phone all day trying to get paperwork sorted out and stuff like that.  And now Davis is known be home and about an hour so not sure how much more time than happy to talk about nothing. so maybe I’ll stop this here and I will say more later.


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an overdue rant

this is so petty but I have to say it to get it out of my system …

Now… with that warning, I hope that no one gets excessively offended. Just my feelings, take it or leave it.  Not a personal attack, not saying anyone is more or less important … just… my feelings, my opinions…. and, actually… this is MY blog… so …..

so I get the E-mail for the NJ Walks for TS … and all they’re talking about in the E-mail are the kids who suffer … and I should join a team to support all the kids I know 

This wasn’t a mass e-mail … it actually HAD MY NAME on it in the “Dear Juliet” section… I kinda get tired of feeling like just because I’m an adult with this I don’t matter to anyone … yet another reason why I’m having less and less to say around other people with TS. There’s not much room for adults with this. 

The same girl also called me and didn’t understand why I didn’t want to support all the kids with TS … all I could tell her is “yes, I get it … all the kids… I was one too, and now I’m grown with it. When you can call me and tell me to support ALL PEOPLE WITH TOURETTE’S regardless of AGE… then I’ll be happy to have a conversation … but… pretty please… just … let me alone… 

::end rant … goes back to corner::

When being a cripple has its benefits…

Ok… I don’t usually feel that way about this. Most of the time I’m cranky as all hell over it…. because it’s not fair. (yes, life’s not fair and all that crap). Sometimes I think that I’m doing great though even when I KNOW I’m over doing it… because I want to be well so bad all the time…


I’ve overdone it the past few days… when I finally decided to get out of the house to do some errands it turned out bad… woke up shaking like a Polaroid picture and in violent pain from my hips down. I really, really hate when this happens … but there was stuff I had to get done, you know? So, I dragged myself out …

damn wheelchair is still in Davis car… I did have one lucky break today…

BUT! I had crutches… I found out that having one crutch is much better than trying to get around on my own without being able to keep my balance. I had a lot of coupons today for freebies… so even though I was hobbling around, look like hell… feel like death warmed over… sometimes I think that people treat me better when I have my chair, or my crutches… there’s less of a stigma surrounding me when I’m not trying to be so proud and kick it without anything. I try so hard to NOT be dependent on DME assistance… I’m stupid like that… but everyone was patient with me …that feels like im always a bother. I didn’t today… well, I did feel bad and weird and slow… but… yeah… I did get 2 big samples from L’Occitane (I LOVE that place) and a coupon for a facial … and stuff from Origins…. and a new nail brick for free from the Deja Vu stand (and a green tea scrub that I’m actually NOT allergic to!)… and I know those people are paid to be nice … but it was kinda nice to be told that I’m pretty by strangers. I don’t feel pretty at all, especially when the symptoms are acting up. All I feel like is a dirty housewife…

I should have more to talk about … but I just don’t feel good and all I want to do is take a shower and go to sleep… I ran out of medication too … reordered 2 days ago and the pharmacy didn’t get it in … Tomorrow it’ll be ready by about 1… Thank goodness!!! But, I’m still behind… I think it needs to be mail order too.


I’m really doing a lot of complaining today!! I don’t think I can handle much more of that

I have to fix that… Here are some good things… 


First… we repainted my living room (and and my mom) now it’s beautiful!! It was puke green… now it’s a very light yellow with an off white trim. I think she did the most of the painting … I just did the trim and other things that involved me not hurting myself … and we made lunch together and everything is nice now

I’m so happy… and the bay window is perfect…and clean.. and stain blocked… My mammy is going to help with the curtains too. I want to do the hourglass on those strange windows. But, that means tension rods and I’m having trouble finding them in the sizes that I want. I think that’s going to be nice with my “bonsai” and it’s future twin that I’m growing from the cuttings!
20130819_1 20130819_2    20130819_3

I got some art over over my kitchen door… and I have another piece still to arrive for my living room. I can’t wait for that one to arrive. This one was from the dollar store (I love that place). The other one says “Home is wherever I’m with you” … so romantic. I want to put it on the wall with some family pictures around it.

We went to Philadelphia last night to make a quick visit to a friend in need… then came home… Davis only almost killed us ONCE .. when he was too busy watching me stop on the invisible break and squeek because of the stopping traffic… he DID stop… we didn’t get hurt… and we only ALMOST ran out of gas on the way home!! But we made it to the Allentown service plaza with only like … a whisper of gas and pushing the sputter!!


And last thing!! This was a gift from my mom a while back… It’s a fake, battery operated butterfly… but sometimes it flies around in its jar… and other times it just sits on the edge and flaps its wings gently. it’s so pretty… and now that I have a BAND NEW computer desk I have space for it to sit on there so I can watch this pretty little thing.

Best part!! No butterflies were harmed i the process!!!!






When good cones go bad…

ImageWell, It’s not like this is common knowledge… but my father co-owns an ice cream cone company… It’s not very big, and it’s not doing very well… but he does own it. They’re based out of Philadelphia. He’s had it since 2007-ish after he “retired” from his job with the fragrance company that was run by a bunch of crazy people on the other side of the country.

When he got this thing, he promised my mother she would be able to help and work from home with it … he promised me that after 5 years it would be mine … and that I’d learn how to do everything there and when he retired I could take it over. Well, everyone got all jerked around and he ended up going into it with the dead founders daughters… they each have a percent… and he has the majority… by like … 1%. Well, the daughters and the husbands think the whole thing is worth millions … the baker is a lying, cheating, crooked bastard… and my father doesn’t understand how the bakery business goes…. but, that doesn’t seem to matter.

The day he got the fucking thing… he reneged on the promises he made my mother and I …it was over. He was going to do it all himself (and the other crew of course) … everything was gone … but he couldn’t leave us out of it. I almost lost one of my jobs because they sold the product at the store and he told the store manager… conflict of interest… things have continued on like that until now. He said that with 20K he could do a lot of things for it… and I tried to figure out an answer even though I thought there might be a way that we could do it … why did I open my mouth, why did I care.

Is there such a thing as filial respect from a daughter?

as we all know, it’s 2013…

What you don’t know is that my mom invited us down for lunch and we went to have a decent time … She called yesterday to see and I thought ok, and so did he… Well, we had the BBQ and that was good, but the have a nice time thing  that didn’t happen. I got to take home a really neat armful of old pictures … that was pretty cool. I like getting to scan the history into here so i know it wont go away…

My father and I got into it… I asked him (again) if I could learn how to make the cones … he’s an island in the ocean of bullshit and if he needs someone on his side at that place… like he already pointed out 500 times… I have too much free time on my hands and need to do something useful

It got ugly… a truly nasty verbal battle between the two of us where I told him that I would learn how to do the cones, if he wanted me down there at 4 or 6am I’d be there… but I’d be someone who wasn’t playing for their own interests … I’d go down there and learn to do the cones or whatever he wanted me to do and no one would need to know what my history was. I could just be someone stupid doing this … But if his baker quits… or anything else happens he doesn’t understand the bakery business… all I wanted to do was  help… all I wanted to do was try to find a way that works for him… that makes a differences so the business might be a little less stressful for him… something. He told me that he doesn’t need me, and never will because bakers are a dime a dozen and if I think I’m doing something that he can’t get someone (__insert rude thing here__) down there who can do that for him. I shouldn’t take it personally either. I am not special at all. Anyone can do my job and cheaper than I am.

he got SO mad at me that he stormed off and didn’t even talk to me afterwards…he just let us leave without even a word. I find out that he feels like i’m attacking him and we teamed up on him. So… We went home… and now I’m painting the living room… and I took a nap too… just something to get me out of this whole funk I’m in now.

We know my father has his own issues… we know that he’s someone who needs to be the provider and that right now he’s pretty miserable with the way the whole thing is going (failing). By me offering to help him it’s a slap in the face for him … that I’m telling him that it’s a big failure. If Davis suggested things to him it would be different but not me.


you know what… I’m done here.

Ableism… or something like that.

Well, I’ve sorta been leaving this out of here… only because of the whole “you jinx it if you blab” kinda thing … but, since (as usual) things didn’t work out … I can only assume it’s safe to tell the whole bloody world about it. Right? 

So, I’ve been looking for new work since February … Things didn’t go so well at the last job I had (nervous breakdown, ticcing and dystonic storms constantly) and I resigned my position. So… I’ve finally gotten my shit somewhat together… the attacks are still here, the tics are still here… the rest of the crap is still here… 

I AM still me, after all… But I’ve been looking for new work … preferably something that I can still do after the government decides that I’m officially too broken, screwed up, damaged and deranged to have a full time job… 

Well, After months of this nonsense I finally got a call back… and then I got a second one … and that interview tanked … but I think part of the reason was ..well, I had to disclose that I have issues….that I go through OVR… for disabled people. 


It’s hard for me to own the label of “disabled” a lot of the time… in my mind I don’t have this problem … I can be what I exactly want to be … but I know in my head and body that it’s not true. I can hope, dream, wish, pray, curse that I will wake up one day with the magical power to put all of these… these issues… into a little box on a shelf and leave them there… like if I was a kid packing away my trains. Put them away in a box in the closet and come back later to them when no one can bother me. 

It doesn’t work like that with mental or neurological health … or anything, really. You can’t just pack it away in a little box and put it on a shelf… eventually, no matter how “good” of a day that you have … the truth will come out like a stain on your nice, light colored carpet…. 

so I disclosed right away…and when I called after waiting over a week past the second interview it was awkward… they “went another direction” … no one can convince me that my brain and stuff doesn’t have anything to do with this…so I’m back to square one … not even the Tourette organization wants me to work for them … that was heartbreaking too … a work at home position and I can’t even do that…

I wonder why able bodied people seem to get everything….no, that’s not it … I wonder why people with any kind of illness can’t even be given a chance… I get tired of feeling like a pariah for things I can’t help. I guess thats all of us. 

Stuff my Mammy taught me…

Way back in 2000, before it was getting time for me to leave for school my mom took one of those fat little note books and wrote me a “mom says” book. Well, when she made it for me I didn’t think it was a big deal… it was kinda silly to me.

Funny how much things can change in 13 years…right? Anyway, I went out to breakfast this morning with a friend of mine, she spends a good amount of her time very down. We worked together at one of the food stores…and I was listening to her talking, and really trying to hear what she has to say … and most of the feelings I have about that conversation I need to keep to myself… But, really… that’s not the important part of this

As I was driving us home it occurred to me about how true this book my mom wrote to me is. How different parents raise different children with different values. Now, I’m not saying anything against her, or her mom. I’m not criticizing or even being rude. I just see that my mom was the best mom for me, and my issues.

So I’m flipping through this book she wrote for me, and I have a lump in my throat reading it … I LOVE my mom

I realize that I’m naturally a quiet person, who gets the most out of writing things down … for as much time as I spend on the phone/fb/twitter… I don’t really say anything, and the less I care about if people hear me. That I try to be modest… and I’m working on not being a know-it-all, and I know I still can be… and of course I can be self centered too sometimes. Oh, and I cannot save everyone. The Doctor needs to be out.

But my mom wrote in this book:

  • It costs nothing to be nice
  • A kind word can make someones day
  • Try to be fair
  • Be honest with yourself
  • Surround yourself with people who support and encourage you in all your efforts
  • You are responsible for your own happiness
  • A good reputation is worth protecting.
  • You will only get as much out of life (or anything) as you put into it
  • start each day with a clean slate
  • Know when to shut your mouth
  • Mind your own business!
  • The universe keeps score
  • learn from your mistakes 
  • Everybody does NOT have to like you and YOU DON’T have to like everyone either.
  • say a prayer for anyone who really annoys you

and yeah, there’s a TON more there than what I’ve written here… but that’s really what I took from this mornings activity…


I’ve taken my pills, (and a little extra) I’m still very stiff and keep locking my spine, and I have the gigantic jerking motion. There’s a spot at my shoulder blade that is KILLING me….So I think that means I should go back to bed… after all, I do have a man in my bed 😛 Hopefully after MORE sleep and a little Tolkien today is going to be just fine.

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spasms, rigidity, and love

I’m in pain… lots and lots and lots of pain … I’ve had really, really big jerks today… much worse than my usual ones, and it’s like 62 times a minute… and that are my entire upper body and torso… and then I end up getting locked in this weird arched position…nothing is helping me … I don’t know what to do about it either… I’m kinda worried I’m seriously going to hurt myself with this….I can’t even sleep because I do it all night too. I think I’m going to try to sleep though …

and I’m a lucky girl… my Davis is so good to me… ❤ I found a man who is patient, kind, loving… and just wonderful for me. No matter how we get sometimes … like… a little annoyed with one another… I know that THIS man is the one for me

ok… I need to go lye down…