26 December 2008

The socialization question

First, lets do a little bit of grammar.
so•cial•i•za•tion (s sh -l -z sh n)
n. The process of learning interpersonal and interactional skills that are in conformity with the values of one's society.
I think that can be learned at home & around town no problem. The question I think people are actually meaning to ask is about socializing. So that's what I'll address here.

I don't know about you, but when I went to school I heard a lot of "You're not here to socialize, you're here to learn" from teachers. That is true actually; school is for learning, not making friends. Add in to that the homework which means no time for playing with friends after school (& kids are getting homework in kindergarten). Then we have to take in to account the "bad kids", the kids you don't want your kids to play with or be bullied by. That is teaching anti-social behavior. Plus there's learning to worrying about if she's trendy enough. And of course gender norms, learning that girls don't play with trucks & that boys can't jump rope. Those last ones are skills I think she'll be fine without. But again, I don't think this is what people are asking either.

I think what people are asking is how will your child make friends & that is a question I can understand people having. Also how will she find people to date when she's older, of course I can see asking that as well. There are quite a few activities at our Y & at the library for younger school-aged kids. Plus there are groups for homeschooled kids, so instead of going to the science museum with 30 kids her age in school, she could go with 30 homeschooled kids of various school ages. Some homeschool activities are for a small age range, say 6-9, others are open to all homeschool kids regardless of age. She'll have tons of opportunities to interact with lots of kids is a wide range of ages, plus plenty of adults. I did take time to learn about what was out there for her to be able to have kid time, that was my biggest worry as well.

22 December 2008

I've called

to apply for SSDI. Damn, that's a hard call to make. I gave them my basics & they will call me back to set up an appt as their system wasn't letting them make appointments.

In other news I am trying to teach myself knitting. It's going very slow since I have to stop & rest my hands so often. I am hoping that I can use knitting as a hand strengthening exercise.

16 December 2008


I think I screwed up my leg again. I did the steps too many times today & now I have this deep bone ache all thru my knee & lower leg. Son of a bitch it hurts. I don't gets this often so I've never come up with a plan to get rid of it. OW! It's that pain they used to try & tell me was growing pains. Today I am formally announcing I fucking hate EDS.

Ow, ow, ow! Ok, I'll stop now.

How am I?

Well funny you should ask, I have no clue. Because I am unable to work I am on assistance which means I have to jump thru hoops on their timetable rather than my own.

In the very back of my head I liked to keep the thought that everyone is wrong & I don't have EDS & by next summer I'll be able to take up jogging to loose this bit of weight I gained from the Neurontin. I can be the me that is a size 4 & wears platform heels everywhere. The me I was 4 years ago, sure I hurt & had times when I couldn't walk cause my legs wouldn't work, but hey those days were few & far between.

I went yesterday to the dr to talk about my prognosis since the assistance office sent me a letter saying I had to either get back to work or apply for SSDI. I asked if he thought I ought to apply, expecting him to say either he had no opinion or maybe. He said that normally he doesn't suggest it to people, but in my case it'd be a very good idea too & he'd help any way he could. I feel a bit gutted by that I guess. I'm only on my early 30s, I should be applying for social security. I guess this answers my question as to if I am disabled or not.

14 December 2008

Parenting Stuff

So I've been thinking about some mom stuff. I am sad that I will never have any more kids. I wasn't planning on having more, so you wouldn't think it would bother me. It's just that it's not my choice, it's as though the choice was taken from me & that bothers me. The amount of decline after each child is significant, that combined with the fact I have EDS mean I just can't risk myself to have any more children. That's just sad to me. Dunno if that made any sense to anyone but me, lol.

Another thing is Toad's pre-school starts registration for the next year this coming week. They have 3 options; 2 are 2 days a week, either mornings or afternoons & 1 is 3 days a week, mornings. This is a change from this year where the kids could do 3 days a week afternoons. The 3 day a week they will have will be very very school-like. I had already been thinking a bit about school since the parent/teacher conference. During that the teacher was all about how Toad isn't too great with scissors or proper crayon grip, the stuff she kicked butt at was kinda glossed over with a quick "I'm sure you know she know --- wonderfully". The scissors are quite large for her hand & I know I sucked with scissors & writing for a long time. I don't see what there is to worry about with a 3.5 year old, but they do. They sent home a pair of scissors for her to practice with. I have a pair here already. Her problem with them is opening them, I am thinking about getting a loop pair to try & see if those are easier for her, they are for me. It's got me thinking about school vs home-school. Not to sound like an over protective freak, but I don't want her to have to be held to useless standards. I learned to cut just fine, just a bit later than most. I loathed gym & a lot of it hurt. From the EDS side I can see a lot of advantages of home school for Toad, plus she is a very high energy kid & that was the other concern they had for her. She needs to learn to not be excited so much. I am going to give homeschool a try this summer with home pre-school & see how it goes.

13 December 2008

'Cause one can never have enough stress

I'm filing for disability this month. When one is born with a genetic disorder what is the 1st day of disability? When I had to stop working full time almost 3 years ago, but did work part time (never coming close to the $ amt that counts as gainful employment) what was my last day of employment? If filling this stuff out drives me to drink can I also add substance abuse to the list of impairments?

10 December 2008


I have a lot of thoughts & emotions relating to being dx'ed with EDS, as I'm sure you all can guess, but I lack a person who I can talk to face to face about this. My roommate had to listen to all the crap & drama leading up to it & she's sick of it (can't blame her), my mother has freaky amounts of guilt & can't accept that I'm as disabled as I am so we can't talk about it. Which leaves me no one, well I guess I could pay a shrink, but what I want is a friend who has emotion vested in me to be able to talk with me, someone who knows me & cares about me to talk with.

07 December 2008

I Know...

I'm still being quiet. I guess I'm feeling at bit in a rut & a bit blue. The days are shorter, I don't leave the house other than to take Toad to school 2 days a week or if we need something from the store. I really don't have any friends at all other than my roommate. I don't drive either. I have no family in the area or in this part of the country even. So I think all the isolation & bitter cold have me down.

Plus much as I love her, spending all of your time with a 3.5 year old is wearing. I don't ever get a day off. If I'm laying on the floor 'cause I have a migraine & she needs lunch, well I just have to do it. I wish I had a partner or sibling or parent in the area to call & say I need an afternoon off every once in a while.

So that's how I am.

03 December 2008

My first day with crutches, sort of

Well today was my first day with crutches, but since it was also a school day I had to have a hand free to hold hand while crossing streets & driveways so I only had 1 crutch. I switched back & forth which leg I matched the crutch up with, I'm not sure which it works best with. If I am only using one it's gonna have to be on my right side, & yes for those of you keeping track that's my Poland's side. Since I have no chest muscles I did find it used back muscles in an odd feeling fashion, not a bad way, but definitely a well worked way. I also found when I matched it up with my left leg I was forced to use my right leg in a more correct way & since I had the crutch I didn't have to worry quiet so much about falling. So I think I am fond of these crutches.

I had been worried that everyone would be staring at me, but most people seemed to pay no mind. Since I live in the midwest where folks were taught far to many manors the world & his granny seemed to want to hold the door open for me. I really prefer to door open buttons since I don't have to worry about hurting a finger holding it while I go thru. Oddly I found more people talked to me, now I wonder if they all thought me strange since I wobbled & staggered a bit. I hope they think I was drunk or whatever, lol.

I got my gym membership today too, that was nice. Now I can go walk their track or do the pool while Toad is in school. :D

02 December 2008

Got some things accomplished & Migraines & Headaches

Well 1st up I got a few things checked off my medical to do list. I did get in for the heart echo & thankfully things look good with that, just some MVP. My PT got tired of the hoops the insurance company was making us jump thru, so she told me they have a fund for people who don't have insurance or who have crappy insurance & need DMEs & that she would get me crutches from that fund. They've come in & I should be getting them this afternoon. Also had the casting done for my orthotics, should take 2 weeks for those to come in. We'll see how those go & if needed we'll adjust or make new ones. Hopefully they'll work fine. So the only things left are finger splints & knee braces. Plus I still have 1 of my migraine types totally uncontrolled to work on.

Which brings me to the second topic today, headaches. It seems I don't mention my other medical issues because EDS takes up so much of my mind. I was dx'ed with migraines without aura at 14 & was put on Midrin, didn't stop them, but did help me be able to fall asleep so I could ignore them & I thought that was a very good thing. When I was 18 it was decided that since I was having 4-10 of them a month I ought to be on a preventive, enter Inderal. That was an evil med, I had the most horrific dreams I have ever had & I had a nightmare disorder when I was young. So I stopped that ASAP & went back to my Midrin. When I was 19 or so my sister was put on this miracle drug, Imitrex. She gave me 2 of them to try & they would really reduce my migraines to next to nothing. Somewhere around 18 I discovered I did have an aura, it was a buzzing in my ears, it was my aura for about 2 or 3 years, but then while I would still get it, it no longer was an aura, but an irritating thing. When I was 24 or so I got my first visual aura, that was strange. I still get my aura migraines & Imitrex still kicks their butt. I get 1-4 a month of these since I figured out aspartame was a trigger, before that it was 4-8 a month cause I just about lived on Diet Coke. I miss Diet Coke a lot, haven't had it since early summer.

I also get aura only migraines, there is no headache just the aura & it will last for ages, then I get this odd pressure feeling in my head, but it doesn't hurt. No clue what that's all about, but I don't much care for it. Those a pretty rare, few a year.

I also get 2 other headaches, my everyday headache & my nasty assed common headache. The everyday one is a low level headache that I can, for the most part ignore. I've had it for a very long time. I know by the time I was 14 I lived on Advil, I was taking as many as I could afford. Some days I would take 20, others 100. I know it was there when I was 12, before that I don't think it was everyday, but I know I had nasty headaches all the way back to kindergarten & they were common, but I don't think they were everyday. It's at the back of my head near the base of the skull. Sometimes (read 2-8 times a month) they will switch, with no warning they get worse. It's as though someone is turning a dial up, they go from 2-4 on the pain scale to 7-9. My neuro says these are migraines also. I'm still not sure I believe her on that. I has a MRI & structurally things seem fine. I from time to time wonder about Chiari, but my brain butt (I can never remember the correct name for that bit that effects Chiari, sorry) is way high up on the laying down, so there is no way a Dr is going to order a sitting up one. I also wonder if it's not the tiny bones up at the top that are just under the skull dislocating. I have some ugly click & snap noises with all my neck & head movements. So right now I am just marking on the calendar each day I have a headache & each day I have a "migraine". I don't take anything for the daily headaches. I take Ultram for my EDS pain & I just take an extra one when I get the "migraines" & if it's there at bedtime still I take a Flexeril. Nothing makes either go away, the Ultram does nothing for the everday headaches & it only turns the "migraines" down a notch or two. The Flexeril does help both a small bit.

Anyhow there is my history of headaches.