16 July 2009

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

12 May 2009

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.

28 April 2009

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.

24 April 2009

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.

22 March 2009

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

08 March 2009

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.

20 February 2009


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.