Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: January 2010

All the more reason to stay home and under as many blankets as possible!  I don’t think I have mentioned this before, but we have a wondering warm room in our place.  Meaning, the warmest room in the house is always different.  Tonight it is the spare room/studio/craft room.  Neil, Shadow, sometimes Kitten Face, and I are camping out in the Wandering Warm Room.

I’m set up on the spare bed with my electric blanket and two afghans, craft bag with my knitting project, a book, a magazine, a sketchbook, and micron pens, lapdesk, and laptop, and will soon be accompanied by a hot cocoa.  What could be better!  The book I have with me is Respect The Spindle by Abby Franquemont (who also has a YouTube channel).  The lovely Sarah let me borrow this book because I have decided I wanted to learn how to spin my own yarn!  Yes, you read right, I have picked up yet another hobby!  I only have a couple of yards actually spun, and it’s not the best looking, but I still did it myself.  I haven’t done very much yet and you know what they say, practice makes perfect!  I’m not looking for perfect, I’ll settle for pretty and someone even… 🙂

Otherwise, there isn’t much to update on.  I am still working on Neil’s socks but am getting close to be almost done.  I have photograph my finished projects for my Ravelry page.  That’s about it!  My hot cocoa is calling me!


First off, I am getting the hang of making “green” smoothies. I have possibly made the best smoothie ever this morning! It’s so yummy. Those of you who aren’t familiar with green smoothies may think it’s a bit weird. Basically a green smoothie consist of a leafy green (the basis of a “green” smoothie), a watery veggie like cucumber or celery, some other veggies if you’d like, and a few fruits. Today’s blend for me was some collard greens, celery, an apple, a banana, and some pineapple. So yummy. The stronger flavors of the fruit mute out the bitterness of the greens. It’s delicious!

Yesterday I went out with one of my knitting friends and met up with another. First stop was the Slater Mill Knitting Extravaganza. So many gorgeous, soft, colorful yarn. Yet also very pricey. There was a raffle table, I bought 6 raffle tickets. I never do, but any one of those prizes would have been phenomenal! Especially the Knit Picks basket of goodies. Alas, I didn’t get a call saying I won… not surprised. lol.

The next stop was to Peter Patchis’ Yarns which is the Mecca for all yarn users!!!  I have pictures but not uploaded yet.  I will soon, I promise.  It’s literally bins and bins of giant spools of cotton, linen, wool, acrylic, and mixed yarn.  They have some skeins as well.  His prices range from 75 cents a skein to $3 -$4 per lb for wool and cottons and blends, and up to $16/lb for mohair and tencel blends.  I walked out with 3 giant spools over 2lbs each.  One is an acrylic/wool blend in a tweed heathered rose color, very pretty!  The other two are %100 cotton, two shades of aqua that I am going to ply together.  I must go back soon!

And finally, our last stop, New To You Too.  It’s a thrift store nearby that has a deal where you spend $1.95 to fill a bag with books.  How ever many books you can fit!!!  I got a bunch of old Reader’s Digest bound volumes, and outdated dictionary, and some other hard bound books to use as art journals, and found Cold Mountain by Charles Frazier which I heard is supposed to be good as a novel.  I loved the movie.  I also found The Poisonwood Bible by Barbara Kingsolver.  I also grabbed a mini mason jar for a project, a pretty pewter votive holder with stars and moons cut outs, and three americana style game board wall hangings.

Over all, I spent about $33!!!!  Frugality FTW!!!

In some medical news, I saw the cornea specialist and it doesn’t look like I have keratoconus or keratoglobus, so yay, but it also doesn’t seem like the majority of my vision loss is true myopia.  Rather, the dryness of my eyes are so severe that I’m continually getting corneal abrasions and irritation.  He said that he has no doubt I have Sjogren’s Syndrome and that around 40% of patients with Sjogren’s actually have negative blood results.  It’s not great news, but better than actually losing my vision.  I got plugs put in my bottom two tear ducts so that my tears won’t drain so quickly and keep my tear film replenished.  I am also on a pretty intense regimen.  Right now I am using OTC preservative-free eye drops 6 times a day, warm compress 2 times a day, flaxseed oil 3 times a day (which I should be doing anyway), and an OTC night gel.  It doesn’t seem a whole lot when it’s typed out, but trying to remember to put the drops in all day is hard when you have basically mush for brains.

In this video I’m discussing anger and letting go of it.  Being my own advocate when it comes to my medical treatment and how important it is for people to be their own advocate.  Lastly, a little show and tell of some finished knitting projects I completed this past week and how it’s sort of therapeutic when it comes to focusing my energy on something positive. I apologize for the audio not syncing up with my mouth…

My last post was hurtful and hateful and I should have never written it.  I’ve hurt my friends and they didn’t deserve it.  I feel awful.  Really, I am upset with myself and my situation.  Things aren’t going very well lately, and I took it out on people that did not deserve it at all.  She was just trying to invite me to a fun night out.  Being in such a foul state of mind, I took it the wrong way and completely blew it out of proportion.

I screwed up.

With that said, I should update on what is really going on.  I have been feeling quite awful both physically and emotionally.  I’m in incredible pain and my meds don’t seem to be helping at all.  I’ve been getting headaches that are crippling.  Last week my physical therapist did some work on my neck and found that my C5 vertebra was twisted.  VERY gently she worked on loosening the muscles around it and put it in as much alignment as should could.  After that, my range of motion was so much better.  I could look up, which I couldn’t before hand, and my headache seemed to go away.  We thought that the twisted vertebra was the cause of it.  The next day I fell down the stairs, really messed up my body.  My ankle is sprained, shoulder jammed, elbow bruised and a lot of widespread aching. Now my headache is back and is getting to be intolerable.   The only way it’s not excruciating is if I am lying down, otherwise, my head starts to pound and feels as though someone is pushing down on my head.  Every time I go to stand up, or even sit up, my head starts pounding and I feel a black out coming on.

It never ends.  I feels like my life is being taken away from me… I’m not walking very well anymore, I am not able to hang out with my friends as I used to, I’m not able to participate in very much, I’m not allowed to be active anymore.  I feel like life is moving on without me.

I had a wheelchair evaluation the other day and it went really well.  I’m getting a C300 Corpus and it comes in PINK!!!!

It has all kinds of different functions which can be seen with the link I provided.  The ones I am getting is the Tilt Function which is the biggest thing.  The whole seat tilts backwards to relieve pressure off of my spine and pelvis and allow my to rest if I feel tired or faint.  The back of the seat can also be adjusted to recline, I’m not getting that power function but it can be adjusted manually.  The other function I will hopefully get is the lift function.  The seat will go up and down so that I can adjust to different levels, reach things in higher places, and be able to be somewhat eye level with friends when they are standing around talking.  I am really hoping that this chair gives me some of my independence back.

This post has been deleted.  It should have never been posted.  I was really upset with how things are going with me and took it out on someone that really didn’t deserve it.  I overreacted to something that really wasn’t there.  I am so sorry to the people I’ve hurt by this.  I really hope that this hasn’t ruined our friendship.