Seat cover!!! and roses

Today is a pretty, pretty day. Xamp is working so when I went to get my newspaper I stopped over at the towns Memorial Rose Garden … it's so pretty… and i got some nice pictures 🙂


This sherbert one was my favorite today! But I didn't see any of the perfect salmon colored ones! … and I love that my camera has the stuff to adapt for people with shaking hands

see!! so pretty. if I didn't get here today I know I'd have missed it!

This is the new seat cover for my wheelchair. 🙂 I love it. and no more nasty back sweat!

Stupid movement disorders…

my tics have been awful today… the whole day…

Shake my head 4 times then wipe the left side of my nose with my hand, from index finger to wrist… then shake my head 4 times… grimace to the point where my ears crack and pop…twist my head to the left in a "c" shape…close eyes and squeeeeeeeeeeeeeeze… open eyes, grimace… whole body shake…

…repeat… then really loud SCREEEEEEEEEEEEEEEEEEEEEEEEEEACH…. repeat, repeat, repeat… and add all the normal ones in… whatever.

Our pseudo anniversary

today's been nice… we watched the hobbit and it was good… and we had cheesecake and went out for an anniversary lunch at the good mexican place …it was a good day 🙂

but all night last night i was having attacks..he ended up having to lye on me to try to do the pressure thing to help me… 😦 


Today I went over to my mammys for a while … we were talking about Tourette's and Dysto stuff… and she did have a post for me to put on the FB page for her… it was awesome… oh wait, i'll just share it

as a TS mother… something that until recently I don't think I ever said out loud…. I agree that not only does my adult daughter have TS but that I wear it also every day. — its always there, its always on my mind I always want to hear she had a good day, that things went well for her. I am sad my remarkable daughter has TS. and yes, some days I cry. I cry because I feel I brought this perfect being into the world and then one day I realized there were some issues. since nobody was talking about TS then and no doctors had any answers to anything I just knew I would treat my perfect little girl like I would any other child in my care.

This was my daughter and with or without issues my mission was to teach her from day one everything and anything I could. Whatever is wrong with your kid u have to help them have a life not only as long as the parent is alive but as long as the offspring is alive……

I wanted to make sure she could be able, capable, smart, articulate, involved, interesting and interested in life. and so the years went by and she blossomed — there wasn't really anything she missed – the awards came, the activities mounted. she graduated from High School with honors, was accepted to a conservatory for her excellence in music, later transferred to another college where she got sick and its too long to go into here and then on for a Master's Degree while working all the way. she insisted on taking a job at a local bagel shop at a very young age. she is now married….

SO what I think is important for any TS parent to remember…… we the parents are not going to live forever. our children are a bit different…..NOT LESS CAPABLE just different…. so it is important to EMPOWER them, don't limit them with your fears.

When they are young get them involved, activities are excellent, keep them busy, let them experience anything that seems of interest to them, teach them how to stand up for themselves, and you as parents get involved…and yes I know often both parents cannot accept TS so you be the parent who does make sure the school knows who you are and that you stand BEHIND YOUR CHILD – give your child the power, the words and the knowledge to allow them to speak up for themselves knowing you are in the wings as backup.. get yourself involved and if you have a day where you just feel overwhelmed and want to cry go right ahead – I do.

but then I wipe my face and remind myself how lucky we all are because TS can knock you down but isn't fatal.

Nobody ever said parenting is easy – but the choices with TS are deal with it, or deal with it. SO, LETS DEAL PEOPLE. …the absolute best way we can!!!

…OH! and later we went over to the Columbia Trail and did 8 miles of it together… got tacos… and my father was an insulting ass when we got home … but it was a nice day… i have a migrane… i'm going to bed.

I’m so mad at this girl…

Im mad at someone… like… really mad at her… she's similar to the way I was 10 years ago but that's not enough to make me feel like this … she doesn't get it … she's going on about how she cant wait to go get her nails done and I should come with her…. so I say I cant and she gives me all the reasons WHY I can… so I finally said to her… what part of SEVERE MOVEMENT DISORDER didn't you get?! and she still didn't get it … so finally I listed all the tics I had in the past day and instead of just being like 'yeah that sucks' or something else supportive and dropping it she goes on about how:

"by god I'll research everything I can until I do understand it! I love you, you're my sister and…." ***at this point she starts going on and on and on about herself, and what happened the last time she went to get her nails done, and about school, and her parents, and her friends…***

I AM NOT RELATED TO YOU … I DO NOT FEEL THAT WAY FOR YOU…we know each other on the internet. We've never met in person. How can you tell me you love me if you don't even know me….you irritate the holy heck out of me …. don't tell me what makes me stronger, don't tell me how you're going to kick the ass of anyone who's bothering me … you're a going-blind epileptic with congenital rubella…you're not kicking anyone's ass. JUST SHUT UP AND SAY OK… You have your own issues, that's something to fight for… but leave my causes, my problems and my disorder alone… and please stop comparing them!!! you CANT DO IT… and it's degrading to EVERYTHING… but stop telling me what 'you're going to do' … it doesn't help…you're not going to learn about them … I don't feel like teaching you because you DON'T EVER LISTEN…

especially when she DOESN'T LISTEN! EVER… I know I have my selfish side, I know I can do more or try harder to be a better person… and I know I talk about myself WAY too much…I know I don't do enough for others. My listening skills need work… I can be selfish and not hear what others are saying… but I TRY to work on it… I TRY SO HARD… but I'm just ready to scream at this one… so instead… I'll turn off FB chat to her for a few days and just keep to myself…since I don't want to hurt anyone's feelings….this is so WRONG of me to feel this way about her. I know this is her way of TRYING… but jesus… just shit up…just SHUT UP… You're just making me hate you, one comment at a time…

but I'm really, really angry … I'm sure this will go away once I get some sleep and I do more cross stitching… and I put this back in its place…

Today we tried Shibari…oh, and my allergies suck

so… the day started out with Davis doing some Shibari on me, but the rope was too thick and I kinda don't like when things get tight around my neck…but he got some nice pictures of it … but in the process of him asking me what I was thinking as he was tying me up I made the mistake of telling him that I thought I had BO in one of my arm pits….

um… we went and got our once a 2 week lunch…and went food shopping and I had over $60 in coupons and I was so proud because we managed to keep the food money down low… I hope to be able to cut another $100 off our food bill this month. That's my goal. We even got another 5% off coupon that I have to use by the 6th… I think I can do that…

um… what else… oh, my dysto was acting up today too, I spent most of the day with my left hand tied up in knots with itself, my pinky and ring fingers were locked in this really awkward position and Davis had to help me a bunch while we were out so that I could get my hand to stop contorting and be able to unlock my fingers a bit… sometimes it helps, sometimes it doesn't … and it stayed locked up a lot but im glad it's a bit better now …

and I found out that Teavana doesn't do proper allergy warnings when they have free tea. we went to the mall to get the free medium Tea today and they mixed blueberry and pineapple tea but they didn't have any food safety paperwork up and I got sick from it … oh well… but im ok

Not much else to report today … still dreaming of my house in maine … missing the 3:30am sunrise…