After recently looking at others blogs on WordPress.com, I found that I really liked the set up and I can add different pages and whatnot without having to set up whole different blogs! Very exciting! This way I can keep everything in one place and not go weeks (or months) without updating one or the other. Hopefully those that have been following me on my previous blogs have found their way over here! That’s if for now, I still have some graphic editing stuff I want to do on here then it’s off to my Knitting Group!
I give up, oh handwarmers! Needless to say, my beautifully soft cashmere yarn is not meant to be handwarmers. If it was, they’d be done already! Instead, methinks it’s more apt to become a neckercheif of some sort. Just need to figure out the best stitch/pattern for it. A big YAY to Vogue’s Stitchonary Vol. 1!! All kinds of pretty lace stitches to choose from!
But first, I need to finish the wrap/neckwarmer I’m working on that was mentioned in my previous post. I worked on it for a few hours in the last few days but turns out that even that little bit is enough to aggravate my wrists. So, no knitting for me today, sadly…
Lately my legs have been getting really achy. It’s a combination of feeling overworked and under-worked at the same time, if that’s even possible. It’s been driving me insane. I finally decided to dig out my old TENS, which desperately needs to be replaced, to see if that would help. Ta Da! I don’t know why I should be surprised, haha, but it did help. I stuck the patches right on my thighs and turned it on. the achy feeling started to go away immediately. I’m going to ask my PT for a new one since this helps so much.
Tonight I went to my first meeting of a knitting group. It was a great time. Great people. Great coffee. I had been wanting to join one for a while, but since I can’t drive it wasn’t really an option. One of the guys from the group has offered to give me a ride there! I love nice people! It’s great to get out of the house, even if it’s only a few hours a week. It definitely makes a difference. Knitting is sort of like therapy for me. It calms my mind and I am so grateful that I am still able to do it! It’s also good exercise for my hands. My OT is glad for that, too! If anyone is interested they should go check out my knitting blog: The Knit Ability.
… and drink coffee! Well, decaf soy mocha latte for me. I went to my first knitting group meeting and had a great time. They are my kind of people; laid back, quirky, and love to laugh. I brought the scarf/wrap thing I’ve been working on with Life’s an Expedition: Venetian Lights yarn. Lovely and beautiful yes, easy to work with… eh, not so much. I mean, I manange just fine but it can be a pain. 
If you look closely you can see that it is not twisted. The strands can easily be dropped or more.. . I’ve been getting little extra loops when I knit because one strand is a bit longer than the other – it seems that way anyway.
I am still “hemming” and “hawing” over the fingerless mitts and which pattern to use… I would love to do a pretty cable pattern but am so unsure if whether it’s the *right* pattern. Meanwhile, my poor hands are FREEZING!
Yep, that’s right, I joined a local SnB and someone is even nice enough to come get me! See, I am no longer able to drive due to my Ehlers-Danlos Syndrome and my boyfriend works second shift, which makes it rather difficult to really do anything during the week. With this, and the fantastic fellow, I will be able to get out of the house at least once a week! I am so excited! A friend of mine picked up a book for me Pints & Purls: Portable Projects for the Social Knitter! I am such a nerd, but I am OK with it! I just have to get my hands on my copy! There are actually a lot of neat patterns in it. There are a bunch of pictures of FO’s on the book’s Ravelry page. Hopefully, I can get it from my friend soon! Now it’s off to bed for me, have to be up early to get my retinas examined!
Ok so, I started PT and OT and it had been going GREAT! I love Aqua Therapy and it feels wonderful to be up and moving around and using my muscles. Unfortunately the past two appointments I haven’t been able to get in the pool. The first time I was having severe gastro-intestinal issues, and this past appointment my Dysautonomia went haywire. My blood pressure was elevated and my heart rate was too high. I sat there for about 15 min with my PT checking my vitals every 5min and eventually sent me home. I’m hoping it’s only a thyroid issue, my previous GP appointed resulted in elevated TSH (thyroid hormone) levels and I had it rechecked yesterday. If it is the thyroid it’s an easy answer… synthetic thyroid therapy. If not… I supposed it’s back to the cardiologist. I should find out in about a week, hopefully before Christmas.
My MRI results of my C-spine and brain were “normal,” I use the quotes because I know for a fact that there are some abnormalities, but not significant ones to a general neurologist. Someone more versed in EDS and Chiari would know what EXACTLY to look for. I’m going to seek a second opinion, I think. My neurologist still wants a Thoracic and Lumbar spine MRI and is talking to the sleep specialist about getting me a sleep study to check for Sleep Apnea, another “fun” thing that runs rampant amongst EDSers.
On a happier note, I am scheduled to be evaluated and fitted for a new awesome wheelchair on Jan 7th! After talking to the technician it looks like I will be getting a power chair with tilt function. He’s also going to help me with constructing a ramp outside my house and other practical things. Most likely an inside car lift for our Outback as well.
We’ll see what happens…. It sucks when there isn’t even enough energy left in me to play around on the computer.
Sigh, I wish I had something to show everyone (anyone? anyone at all?), I don’t seem to have the energy to even knit. Tonight is the first time in a few days I have any energy to be on the laptop! I made “some” progress today… I finished the cuff of one of the mitts. I have one finished completely, but there are a few spots I’ve screwed up on and am going to frog it. Now, it’s a matter of finding a better written cabling pattern. I have a few bookmarked. Hopefully tomorrow I will get more done and some photos taken and uploaded. My Ravelry page is desperately lacking in photos.
Why another knitting blog? Well, because I can! And… I’m hoping that having a knitting blog will help me actually finish the multitude of projects I start then sadly get shelved because I want to start yet another project!
I am not even sure how many projects that I had started and shelved, or forgot about, or was distracted by another enticing project. At the moment, I am working on a wrap and a pair of long fingerless gloves, and have a million – ok so that’s an exaggeration – other projects I want to do! The other part of things is that I am hardly ever satisfied with the way something will come out. For example, the fingerless gloves I am working on… I finished one of them, but there are a few noticable mistakes. the plan is to knit up the second one and then decide whether or not I want to rip out the original and knit it all over again.
Then there is my other problem… Well, I wouldn’t classify it as a problem per say because I have plans for all of it… haha. Anyway, I have an addiction to yarn. Not the everyday affordable yarn that is available at the local Michaels… of course not… It’s the expensive, beautiful hand spun, etc. type yarn. I’ve just gotten 7 balls of Noro Silk Gardens, 1 ball of of a beautiful eggplant 100% cashmere lace weight, and about 3 or 4 hanks of a hot pink 100% Cashmere yarn, and I have more coming! The fingerless gloves I am working on are made of aran weight 100% cashmere… they are so unbelievable soft. The wrap is a cashmere, merino, mohair blend.
I suppose that’s all for now…
I had an idea today, and actually felt up to working on it (who knew!!). Yes, another project! Now, I have problems with pacing myself and tend to keep working on a project well after I should have stopped for a break. Before I knew it my good friend Mr. Raynauds decided to come for a visit. My hands were burning from being so cold. My fingers had started to turn grey and I figured I should stop for the moment. I was working on the computer (the iMac) for about 3 hours!!
….and had accomplished pretty much nothing. Sigh. I made myself dinner and a cup of tea to warm up as well as climb under my protective layers of a Snuggie, electric blanket, and afghan. Yes, I was that cold. I went back up to the iMac and worked for a few more hours and actually made some headway in making a nice background for my website. With the excitement of finishing the page I found the energy to keep going and start to edit the website. Skip ahead a few hours and the FAIL sets in. I couldn’t figure how to get it to work the way I wanted it. I gave up for the night and then the full impact of the stress I put my body under hit me. My neck hurt, pressure in my head, low back pain, hand achey, etc. Sigh.
If I look at things half-full I did get a bunch of stuff done. It’s just, I could do without the soreness.
Tomorrow is my first Aqua Therapy appt. We’ll see how it goes. I also need to talk to the PT about the wheelchair. I need one with a tilt function to relieve the pressure on my pelvis and spine. It will also allow me to rest a bit for when I get tired, lightheaded, or dizzy. Most likely the Quickie Zippy TS. What’s really cool is that I can get it in PINK!!!! We’ll have to wait and see.
Two sets of MRI’s down, apparently another one has to be done. I should just make a bed in the neurology wing and sleep there for the next month. Needless to say I am pretty frustrated. According to the radiologist and neurologist, my scans are fine. According to people who understand EDS and the “friends” that go with it, I need a second opinion. I am in the opinion of the latter group. My scans are not “fine.” There is a clear retroflexed odontoid causing some compression on the brain stem. There is possibly a minor herniation of the cerebellar tonsils of about 4mm. Unless it’s a severe herniation, it can be difficult to detect on a standard mri, a standing mri is often needed.
I am not a dr, but I do have considerable knowledge of the brain.
I am so exhausted and fatigued ALL THE TIME. I have been fainting more lately and generally feel like crap. I just want to cry and be a 3 yr old about all this. It hurts to stand, it hurts to lie down.
My PT appointment went ok, my body is a lot worse than I thought it would be. I’m not supposed to be walking because my joints are too lose and subluxed; putting an extra weight on them will only make them worse. We are starting with very small core exercises and on Friday I am supposed to go in the therapy pool. My PT is looking into getting a new chair for me. I need one with a tilt function so that if I get dizzy or faint I can tilt back and rest a while. It will also take off a lot of pressure on my hips and spine.
The OT ordered some Oval-8 finger splints for me and made a wrist splint with a thumb spica for me. She’s going to make the other one when I see her next and as well as another set without the spica so that I can have some freedom with my hands to do more art work but still have the support.
I keep fading out… so I will end this for now. Updates will follow…
Genetically Incorrect 