Please Read

There is a scam-assed company out there who are selling a "cure" for EDS. I'll give you a moment to collect yourself from the confusion, anger or laughter that you are experiencing..., done yet?...no?, I;ll just give you a few more seconds... Anyhow it seems this magically company has figured out to turn a remedy for piles (aka hemorrhoids) in to a cure for not only EDS, but also:
Arachnoid cysts, Ascites, Multiple System Atrophy. Chordoma, Chronkite-Canada Syndrome, Teething, Muscular Fasciculation, Horner's Syndrome, Lenox Gastault Syndrome, Megaloblastic Anemia, Myelodysplastic syndromes, Benign Essential Blepharospasm, Pseudotumor Cerebri, Enlarged Tonsils, Spasmodic Torticollis, Benign Essential Tremor, Kugelberg-Welander Disease (i.e. SMA type III), and Wiskott Aldrich Syndrome.
You shocked? Surprised? Amazed?
http://onesickmother.typepad.com/ - go read this to get OSM's full post on the EDS version

For her full reports on this jack-assed company read these
http://onesickmother.typepad.com/my_weblog/2009/05/oslo-health-solutions-preying-on-the-sick-part-i.html
http://onesickmother.typepad.com/my_weblog/2009/05/oslo-health-solutions-preying-on-the-sick-part-ii.html
http://onesickmother.typepad.com/my_weblog/2009/06/oslo-health-solutions-preying-on-the-sick-part-iii.html

Poland's Syndrome & Knitting

I had mentioned a few months back that I've taken up knitting, the one upside I hadn't realized til recently is that this will be awesome for Poland's.

First up, Gloves. If you've PS you know what I'm talking about right away, for those who don't please grab your normal gloves & put one on then either grab a glove that's much, much to big or take your other glove & pull it on so that the wrist band is on just past your knuckles. Feel that 1-2" of empty glove finger just flapping around, yep it bothers us too. So my options thus far in life, if I want my gloves to fit each hand, are buy cheap stretchy gloves, buy 2 pair of gloves that come in a size & just use one of each or just don't wear gloves. Now I can make my own gloves & each glove will match the other & fit!

Second up, Sleeves. After the above paragraph you should know what I'm talking about with sleeve. Every sweater I make will have the right length sleeves & the correct circumference as well. My right arm is a bit narrower as well as shorter.

This is gonna be awesome! Now I just have to get my skills up enough to be able to knit a glove or sweater, lol.

My head, my head, my head...

I am so tired of these headaches! I have a constant headache, had it for over 20 years now, then the migraines for variety & then there's the other headache. My constant headache is a low hum of discomfort at the base of my skull, the other headache is a fucking icepick jammed right in there. The only thing that helps it is to have someone grab both sides of my head & make like you want to pull my head off, you must pull straight up, that stops the pain for 5-15 minutes. Or I take my index, middle & ring fingers of both hands & jam them in to the point of dislocation & that works until I stop, the second I stop the pain is back. Really the center of the pain is an area the size of a quarter, 50 cent piece, then radiates pain out from that. It's not all the time, maybe 2-3 times a week.

Anybody got any ideas? Pain meds don't do anything for this other than make me sleepy, migraine meds do nothing, my laying down MRI shows all is good & I doubt I can get an upright. My neuro & gp both referred me over to PT & I'll be getting a neck brace for when it's bad to see if that helps. I wonder about Chiari or CCI, but with a happy MRI I doubt I can get anyone to look further.

Social Security

I got my letter from Social Security with their decision. I was approved. I know some areas take ages to process claims so I guess I live in an area that doesn't have a bad backlog since I only applied at the end of Dec. I think having gone to Mayo Clinic for my diagnosis & the fact the geneticist there stated flat out it will never get better & will only go down hill helped me get approved.

What I am glad for (apart from being able to pay my bills now, lol) is that when I have a good day that energy doesn't have to be sucked up by a job so that I have none left for Toad. That was really hard for me, I would work a 3 hour shift & then spend the rest of the day either just flopped on the sofa or napping on it & she would have the tv on. Now we are able to sit & read together or play together. On Wed after pre-school we were able to stop at the fast-food joint & have lunch together & I realized it's the 1st time just the 2 of us have ever eaten somewhere together. I'm glad this means my daughter gets a mom rather than a woman who can't do anything with her, I can't do a lot, but at least now I can do some stuff.

Not much new

I have convinced my doc that I shouldn't have knee surgery for the time being. I'll be getting a knee brace & we'll see how I do with that. If that works ok-ish then I can hold off on the knee surgery consult. I do need a hand consult to see what/if anything ought to be done for them. I am going to ask my genetisit who said he'd refer me to anything I needed) to send me to the hand clinic at Mayo, between the osteoarthritis, the EDS, the Poland's & the neuropathy I am past what my GP wants/can deal with. I think it makes the most sense to see if the hand clinic will see me & try to deal with all the issues than get 1 doc to deal with each. I could have the neuro for neuropathy, a rhum for the OA, a othro for the PS & the GP & rhum for EDS, really that seems a bit much & a bit scattered.

I'm still doing the arthitis pool class at the gym & it's going well. I can't seem to go below 600-300-600 for the gabapentin

I guess...

I'm still quiet because I don't have much to say, lol.

Hmm, let's see. Amelia has been back in school thanks to us getting a carpool thing going. We've got it set up to go til the end of March, by then it should be warm enough that we can walk. She's still loving pre-school. Her parent/teacher conference is coming up in another week, I know I'll hear all about how she doesn't use scissors well & her pencil grip is incorrect. With the utmost respect I say "Bite me.", really she may never do them correctly, I don't. Also I have noticed a few things over the years that have got me wondering if she has development disorder, ASD or ADHD, something in there. If she does it's pretty mild, but there are quirks to her behavior that make me pause, & there are quite a few of them. Overall she's fine, but I am thinking of having her evaluated to see if she does have something so we can get a plan to cope set up. Thankfully where I live evaluations are free. I'll be doing this come summer.

I am the same as ever. I decided not to see the ortho about knee surgery. I don't have enough of a support system going to have the help I would need while I recover. I'm going to ask for a knee brace instead. I am still tapering down on the gabapentin & it's going well, I'm just yesterday down to 300-300-600. I am dropping things more, but I'll adapt & deal with it.

I am still knitting & getting better. I've done a scarf, washcloth, a toy hat, some pins & am working on another scarf & going to try my hand at a sock soon. I think it's helping to keep my hand strength while I reduce the gabapentin.

I got my tax $ & bought a nice pair of shoes since I've given up on orthotics. I've gotten 2 of them so far & they suck. They drive me nuts & I can't see any benefit when I use them. So I decided quality footwear is what I need.

Update

I don't know where the hell my mine has been, but I think I really needed the blog break. I had been popping in from time to time to read other peoples blogs, but I needed to step back a bit I guess.

Anyhow, what's new with me? I'm got done w/PT for general joint crap & now may be heading back for my neck, stupid neck. I am trying to go to the water arthritis class at the gym, hope to do that 2x per week. I modify 90% of it, but the teacher is fine with that.

I got my orthotics & the one sucks so I doubt I'll be wearing them. 2 castings & 4 appts for 1 ok & 1 useless orthotic, lol.

My right knees pops a bit out all the time now so I am going next Friday to see on ortho for a consult to decided if surgery is needed. Dunno if I'd do surgery right now, but I'm up for seeing what ideas this doc might have.

I'm tapering down my Neurontin, I'm sick of the weight gain & I think that's a big knee pain/sublux issue. I was at 900-600-900 & got down to 600-600-600 & am switching to 600-300-600 this week. My goal is 300-300-300 or 300-0-600, something around that. I have gained 25lbs in 18 months & that's got to be killing my knees. My neuropathy is coming back up with these lower doses, but I think I'd rather have the neuropathy.

I'm not dieting, cause I suck at it, but I have cut soda out & am just trying to nibble snacks so much. Also trying to be sensible with what I eat. Like I still get take-away, but last night I got chicken sandwich instead of a burger or if we get drive-thru Toad & I will split a burger & each have our own small fry. Even if I don't loose much, that's ok so long as I stop gaining.

Feeling blah

I am sorry I haven't been around. My sister died this time of year 2 years ago this time of year & I my EDS is trying to see just how cripple it can make me, plus my daughter is having a few issues that need some addressing. I applied to SSDI, have sent in my request for further info & all the medical releases. I am just basically feeling a bit like shit all in all.

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.

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.

Ow!

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.

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.

'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?

Frustrating

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.

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.

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

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.

My day

Degenerative

It's a sucky word isn't it? Means things don't get better, means instead of working harder & getting better you get to work that hard & if you're lucky you get to stay the same. Now, it's that a joyful thought? Woo hoo, bust your ass for status quo! Plus, it's not even guaranteed, you could work that hard every day & still go downhill. Well with all that can't you see why I signed up?

You may have noticed some sarcasm in that last paragraph. I hate knowing that this might be as good as it gets, that barring something real odd happening I'm not going to get "better". I hate that next month my doc & I will be discussing Social Security.

I just wish I knew where I'd be in 6 months or a year. How far down will I go? It's a bit like falling in to a hole & you can't see the bottm.

I wrote this the other day & for some reason didn't put it up, since I can't remember, I'm putting it up.