Organizing the Knitting

As a newer knitter I don't have a ton of stuff, but I realized it was starting to take over my "office" so I decided best to get things under control while I still had a chance. I had an old Mary Kay sales rep bag & some nice stacking bins for yarn.





It's got tons of pockets & compartments so it's perfect for supplies & needles.

You can see I lost a few of these pouches, but I found some others that fit well. They are velcroed on so you can just pull them off which is nice.

The top two are my grab & go pouches, they have all the basic/common stuff I might need & they are duplicates. That way if I leave it in the car or where ever I still have all the supplies I could need handy. Then I have an empty one & one with the tails from projects, I just can't seem to toss them.

The top left has my KnitPicks cables, the top right by "everything else" pouch. I've cable needles, stitch markers, pins, row counter & even more in it. Then on the bottom I have my tips (still in the little baggies they come in) & next to that my smaller sock sized circulars.











On the flap are a few pockets, I have the little stoppers for the KnitPicks cords & I'm sure I'll fine more for the other pockets.










Then in the main compartment I have my straights & in the thin pocket just in front of it I have a bunch of mesh project bags, they are green & you can just barely see them.









Then I have my stackable bins for yarn. Right now I don't have much yarn so it's all in one. Once I have more I'll separate it up more. I have at least 8 of them so they should hold out ok for a while.

My heart broke today

Today was one of the worst days a mom with EDS can have. Girlchild is to young to be dx'ed with EDS according to the "rules", but today I not only realized she as the same HCTD I have, but I caused her joint to come out. I could die I feel so badly.

I was putting her shirt on & she didn't want to put a shirt on & was fighting me a bit & her elbow went out. She was more upset than in pain & it went right back in after she moved her arm the same way I do when my is just a bit out. I have to will make sure I hold her upper arm from now on, not her hand.

How, as moms, are we suposed to deal with this? The guilt is so massive. She is fine & bounced back quick. She flexed her arm a few time over a few minutes & that was it. Ugh, this sucks & it's not going to get easier to deal with I bet. Somehow I think a mom's heart breaks each time their child has a dislocation.

Random Little Things & Some Pictures

Pictures are always fun so I'll start with those. A while ago I took some pics of me doing some EDS "tricks" so that I could ask a group of people with EDS if they thought I may have a HCTD, they thought I looked to be a person who could & told me to ask my doc. Both my docs agreed. I looked at a lot of pictures on the web & kept saying, yeah, but everybody can do that. So I'll share with you a few of my pics, perhaps if you are wondering if you have EDS you may see these & realize it's worth asking your doc about.




My leg turned in. Both legs do this, but this is just the one turned. I can go further than this, but if I do I causes mild pain, when it's just this far it doesn't hurt.





Then we have my crap ankles. The left leg is fine, no discomfort standing like that. My ankles roll like that, & more, while I'm walking & cause me to fall & that part sucks, & hurts.





Then the here's the easiest "trick" I've got, but oddly enough this one seems to gross people out a lot. I really don't understand why this one bothers people so much. This is called Swan Neck, I always called it Witch Fingers, lol.


So now on to my odds & ends. I went to the Parents Orientation for pre-school last night. I really think this school is a great one for GirlChild. She's going to have so much fun. I did mention to the one teacher that she may be a bit more prone to falling than the other kids as her ankles are kinda crappy already. Speaking of she fell & busted her lip today. Her tooth punctured the lip, but thankfully it didn't go all the way through & stopped bleeding before too long.

I am still feeling scared about my upcoming appt. Like what if he laughs me out of the office for wasting his time?

Oh & incase it wasn't obvious my headache is pretty much gone.

Ow, Ow, Ow, Ow

& just in case you weren't sure Ow.

I have had this one headache at the base of my skull for most of my life. Most days, it hurts, but it's not horrible. It's a bit of a bother, but for the most part I can just ignore it. Every now & again it turns in to headache from hell. Then it hurts as bad as my migraines, but it's not a migraine, nothing much works on the pain either. I just have to wait it out. I've tried going to the E/R for the pain, but as I can't have Toradol they assume I'm a junkie. I'll be seeing my neuro next month & will be getting a headache plan written up & in my file so that they will give me something for the pain so I can at least sleep my way thru it. It usually last 1-3 days, sometimes longer.

So anyhow I'm on day 2 of this beast & was up most the night from the pain. Tonight I get to go the the parents orientation for pre-school. This should be fun. Think they'll mind if I writhe in agony under a table?

Disabled, what does that mean?

Really I don't quite know what disabled means. I know the Websters on it, I'm able to read it & comprehend that. What I don't know is if I am disabled. There are so many forms of disabled that I don't know where I fit.

There is the % disabled where your STD or LTD decides how much to pay you based on how disabled you are. Well I'm not collecting that so that doesn't apply.

There is SSI/SSDI disabled where everyone (well except for those folks who pray for you & think you ought to drink wheatgrass & try harder) agrees your disabled. Well I don't get that yet so I'm not SSI/SSDI disabled.

Then there is the obviously something is wrong with her disabled, the sort where people look at you & say "well bless your heart, your such an inspiration!". I rarely ever get that so I don't think I'm that kind of disabled.

I do have a parking permit which makes some people give me rude faces, but since I fall randomly the DMV says I'm disabled.

My roommate says I am. So I wonder, when do you "become" disabled & how do you know? I fall randomly, can't work, am in constant pain, have problems with my legs, arms & head. Dunno, think I'll get a note in the mail to let me know?

Sometimes Wheelchairs Suck

Yes, I know, really I do; they are a wonderful invention & are a great thing, but with that said please allow me to begin bitching about them a bit.

I went to the zoo with my daughter & my roommate this past Friday. This zoo is all trails so it's a place I can not do without a wheelchair, & as I am a broke girl, I don't own one. So when we got there the only one they had left was the oversized chair. Now I do think it's great they offer an oversized chair for people, but OMG if you aren't oversized that thing is a torture device. Because of my PS I can't use my arms to wheel very well, which means I wheelchair-walk most of the time. (Ya know sitting & then walking the chair along.) These chairs weigh twice what most chairs I use weigh. I couldn't reach the wheels at all to have used my arms if I wanted to.

Plus the makers of the trails we were on assumed you had a very strong carer with you to push you up the steep grades they had. I didn't. I had to either use the chair as a walker or use the railing on the side to pull myself along. Yeah, that'll help me with my dignity. After an hour & 1/2 we stopped to eat & I checked back out front & they had a normal chair again, thank goodness cause I couldn't have continued with that other chair. We spent 3.5 hrs there, I never would have been able to do that with out a chair, so all in all I am thankful places offer them, but damn if I am gonna try the oversized chair again. I also learned that when trying to build some speed to get going while using your arms those handles really get in your way.

So now my questions about chairs. If anyone knows, please leave a comment for me.

1. Where does your purse go? It gets in the way on your lap, on the back anyone could steal from it.

2. Since I don't own a chair I didn't get the Emily Post's guide to Chair Etiquette, sorry. When a wide bit of trail or road is 90% clear & it's down hill is it ok to zip along at a nice clip as long as you have full control of the chair & can stop or move quickly if needed? If so why did the few people I went past look at me like I was breaking some cardinal rule?

More about Poland's Syndrome

Well it's just so hard to find info about Poland's & hard to find people talking about it. Most people who are talking about it are parents with an affected child, not adults who have it or they are people who are severely affected. So here are some further details about my PS & how it's effected my life.

I was dx'ed at birth because my pediatrician was familiar with PS. My hand is pretty noticeable if you're looking right at it, as was my chest. While I was in elementary school the only thing that was different about me from other kids is that I couldn't cross the monkey bars or do cartwheels. Aside from that my PS didn't have any real impact on my life. I would hold my right hand so that the fingers were curled under the palm, like a relaxed fist so they were hidden when I wasn't using my hand. Heck I still do this. Once I got to middle school/jr high life kinda became hell for me due largely to the PS. The other girls were getting breasts & I was getting a breast, yeah notice the lack of plural on that. I was never good in gym & had a lot a problems there, but once I was expected to change clothes so that the whole class (well all the girls) could see this? Oh hell no! I simply stopped taking gym most days & failed every year from 5th grade to 9th grade. The teacher would come stand next to me & make me change sometimes. I was mocked for my lack of breast on the right side almost everyday. If I knew then what I know now I would have made my mother pull me from school & do home school or just pull me from gym.

If you have a pre-teen who has PS please for the love of all things holy keep an eye on if they are being mocked & make sure to buy them some of those silicone breast forms, you can pick them really cheap. Also if they have swimming for gym find out if they want to take it, don't assume they will want to since they might like swimming &/or gym. If they don't want to take it get them excused. I was so horrible depressed during that time. I of course failed the scoliosis check each year. You'd think that if you fail once & it can't be corrected you'd be excused for the other years. What the hell is up with having to do that each year? I did I honestly wanted to die from dealing with the mocking & gym class. If you're a parent you kid may be fine in school, so this isn't want will happen, but it could.

In 9th grade I switched schools due to a move & I just skipped gym & was fine. I made sure to get an A in health & so I'd then make out with a barely passing D- for gym/heath since they were graded together. In 10th grade I switched to the Catholic school & there I was again fine. I flat out told my gym teacher I would not be taking gym & would not be changing. She would let me jog or jump rope in my regular clothes & would give me a D for that. I figured that was quite fair & did it. Add in my A in health & I was getting a high C. I eventually did find a good method for stuffing my bra & would change sometimes.

So there you have birth to the end of school, I'll do more stuff later including my breast reconstruction.