Friday, March 29, 2013

Fabulous news!

The FDA approved the drug I've been waiting for!!!!! Biogen says they will have Tecfidera available in a matter of days. I already have my appointment for next week.

I was so happy I actually started crying. I had been hopping to my laptop all day constantly refreshing the news pages (it was almost like the last moments of a ebay item you really really want and constantly refresh to make sure you aren't out bid the last moment).

This means good things. With luck I will soon have my life back. I'm in the frenzy rush of trying to finish my show. After the 15th of April my life will be mine again. And perhaps by then I'll be seeing some results from the meds and stay up past 7:30pm.

Wednesday, March 27, 2013

Ten on Tuesday

10 Things You'd Do If You Won the Big Powerball Jackpot.

$338 Million dollars. What wouldn't I do? But I suppose I could narrow it down to the top ten.

  1. Pay off our debt- mainly the credit card debt that three summers of unemployment has put us into. There's probably enough there to knock out the mortgage as well. 
  2. New car for the husband- he has my old car and the thing is falling apart. It's on the verge of being a death trap. I'd really like to get him a pickup that has a full back seat (for car seats). I really like the one that has in floor storage too...I don't remember the truck. My car I love and I'd just do all the work to it that we've been putting off and a new set of tires.
  3. Daycare/Kindergarten tuition- This is our biggest money suck right now. We pay more to our daycare each month than we do to our mortgage. And frankly the kindergarten program there would probably better for Little Dude, but the costs are killing us. I'd set aside the funds for these in a separate account and just pay them from there and not have to worry about it. 
  4. The house- I would get This Old House to come on board and help us redo the house. Make the basement not leak. Give me enough hot water to fill the tub all the way. Finished walls, finished stair cases, finished floors. No plywood to be seen anywhere, except in the workshop. I'd have my studio/office. The kids would have their playroom. And we'd make it all adaptable and ADA compliant, so should my MS take me along the path of greater disability, the house would still be able to be home.
  5. Set aside money for schooling- for the kids, for myself and my husband. Learning should never end. I'd probably start a scholarship or two.
  6. Invest in the CNC machine- It's a project my husband has been dreaming of and planning for years. I'd like to make it happen. Maybe then he'd quit and do that for a living. Personally I think I'd push him to quit and then start a local MakerSpace. He's the kind of guy that has to be doing something.
  7. Donate to MS research and assistance programs- no brainer on that one.
  8. Make a large donation to the Hartt school- specifically in regards to the scene shop. Helping us along to a new space that is proper and safe (and has heat and a/c!) I'm terrified that we're going to get stuck building sets in a closet somewhere when they are tired of paying for this place. 
  9.  Payback my parents for all the money they spent on my college, braces, etc...- it's the least I could do.
  10. Buy yarn/fabric/craft supplies- with my studio done, and the bills paid, I think I could finally indulge in some artistic lovelies. I'd get my Kromski and buy all the sock yarn that I want. Get a good serger and proper dress form. Have a sewing cabinet made. Get some new brushes and paints. Buy a stock of some acid dyes and see where that leads. Oh if only.
I noticed after reading what others wrote...I never thought about quitting my job. I love my job. It keeps me sane (which is a very scary though). I'd just make it easier for me to do my job. I guess it's hard to shake off the practical Capricorn in me. 

Tuesday, March 19, 2013

Ten on Tuesday

10 Random Things On Your Mind

  1.  How am I going to glue the new feathers on the parrots for my show. Hot glue dries fast but has too much dimension. White glue will take a while to dry. Hrm....must ponder.
  2. Where am I going to scrounge up two more dollars for lunch?
  3. My legs hurt. 
  4. Pondering the best way to color glaze these flats. (can you tell that I'm at work?).
  5. How to drill the slots in the balls for the ball joints without mangling my fingers as well.
  6. We should be teaching boys not to rape instead of blaming the girls 'for getting themselves into those situations'. Yes taking pictures and videos was wrong, insensitive and stupid, BUT YOU SHOULDN'T HAVE BEEN RAPING ANYONE IN THE FIRST PLACE!!!!!!!
  7. I'm craving Starburst.
  8. If I mailed in my prescription over a week ago, they really should have it by now. Shouldn't they? I'm going to have to call and yell, aren't I? Ugh....I hate this.
  9. Is it really only Tuesday?
  10. That was the sorriest excuse for a bacon cheeseburger that I've ever had.

Wednesday, March 13, 2013

Ten on Tuesday

10 Favorite Things That Are Green

This was a tougher task than I thought it would be. I had pondered money as an answer but it truly doesn't qualify as one of my favorite things. I love having money but I hate the necessity of it. Money can do horrible things to people and make people do horrible things. I just couldn't rightly call it one of my favorite things. But here are the things that are my favorites amongst the greener hues.

Granny Smith Apples- my preferred apple. Not just for baking, and the smaller and more 'monster blood' the green the better the eating.

Green Grapes- My favorite snack when I was kid (perhaps explains my preference for white wines). I've expanded my grape repertoire since then but if I remember correctly, these are the only type of grapes I would eat as a kid.

Mint- I love mint. I still balk at mint tea but only because I now associate it with morning sickness. I love the smell and the taste and the tingle of it. And it pairs perfectly with dark chocolate, so what's not to love.

 Lime- And not just in gin and tonic. When out to eat I often request lime in my water rather than lemon.

Forest ferns- there is just something so beautiful about a deep lush forest blanketed with green ferns. *sigh* Now I want to go camping.

Emeralds- The deeper, the darker the better. I have no occasion to wear it, but I love my sparkle.

Leafy Greens- as in the kind you eat. I love salads full of exotic and rich dark greens. No iceberg lettuce for me. My favorite soup is seasoned perfectly with turnip greens. They are so good and so versatile.

Peacocks- varying shades of iridescent greens. Simply beautiful.

 Green Hornet- I love this movie. Stupid fun but it's one I turn to when I'm having a bad day.

 Green Day- Love the music and oh, Billie may be an idiot but I love looking at you.

Saturday, March 09, 2013

Happy Birthday to my Little Miss

(oops posting this a day late...her birthday was Friday the 8th)

My little girl two today, which I guess in some respects makes her a Big Girl.

 I'm still amazed at how big she has gotten. What a difference two years makes.

 Little Miss has a strong personality. She's a girl who when she knows what she wants, she's determined to get it. She's also a girl who understands the power of cute and isn't afraid to use it. (Unfortunately for her, Mommy is immune. I often tell her, "That look doesn't work on me. Mommy invented that look.") Little Miss loves books and being read to.

Likes: Kitties, Hello Kitty, Elmo, Muppets (knows Miss Piggy by name. Calls Beaker 'MeMe' and Animal "LALALA" because of this video), Mommy, Daddy, her brother, climbing, doing whatever her brother is doing, books and reading, her monkeys, her binky, Batman (her third word), babies.

Dislikes: Being told 'No', waiting, having her face wiped, loud noises (vacuum, screw gun, compressor), eating vegetables (unless they are pureed and come in a pouch), and missing out on what is going on.

I gave her a choice between cookies and cupcakes to take to school (daycare) and share with her friends. Little Miss requested cookies. And because I am insane I decided to take it to the next level. Hello Kitty cookies with flooded icing. It's a project I've been wanting to try for a while and this was a perfect opportunity (well it would have been more perfect if her birthday had been earlier in the week and I had the weekend to try this). 

No one had the Hello Kitty cookie cutter in stock, and not having time to order one online I improvised. I drew the face on an index card and cut it out. I cut around that pattern to cut the dough. Slightly more time consuming but effective nonetheless.

I will confess to using a sugar cookie mix. In a pinch it will do, and they really weren't too bad.
Once baked I piped the black out line with the stiff frosting.

Cute, no?

Then with the thinner frosting I 'flooded' the area of the face and the bow. After that I repiped the eyes and added the whiskers. I didn't get pictures of myself doing it because it is hard to do that and take a picture at the same time. I'll do more in depth instructions/pictures the next batch. I really like these and will be doing them again.

The room full of two year olds and their teachers thought they were fabulous. I'm rather proud of myself. Up close they're not fantastic looking but considering it was around midnight and it was my first attempt, I think I did a pretty damn good job.

The only problem is that I didn't get them packaged up before she saw them and the whole morning it was "Cookie. Cookie." I love ya kid, but no cookies for breakfast. Not even on your birthday.

Tuesday, March 05, 2013

Orange Update

As we come upon the one year anniversary of my MS diagnosis, I thought I'd do a little update on how things stand.

After being diagnosed we (my doctor, my husband, and myself) decided that the course of treatment I would take is a drug called Tysabri. Tysabri is given as an once every 28 days infusion. I loved the treatment. I had little to no side effects, noticeable improvement and I got to sit down for 3 hours at least once a month. Like most things, there are risks with the drug, but my team of heath care professionals have a system in place to monitor for them. The main risk with Tysabri is the potential to develop PML, The people who develop PML while on Tysabri have been exposed to a virus called the JC virus. Half the population have been exposed to the virus and don't even know it. It's not a problem unless you have issues with your immune system or are on immunosuppressents. While on Tysabri you are routinely checked for the JC antibody to see if you have been exposed to the virus.

Well, in the fall my test came back positive. The positive test combined with the number of infusions I had (risks of PML grow with the number of infusions to a certain point and then drop off) and the results of my MRI, led to the decision to take me off the Tysabri. Mid January was my last infusion. While I continue to take medications and supplements to treat my symptoms (I take 8 pills in a normal day), I am not currently on a disease modifying treatment. This is in part because I must wait for the Tysabri to leave my system, and partly because we are waiting for the release of a new drug.

That drug is BG-12...currently named Techfidera . (I think this is the 8th name for it). This drug is a pill. That right there makes it big news. Pills over self injectables and infusions. Studies showed that it reduces the relapse rate 53% and the risk of disability progression by 38% when taken twice a day. (For those who are counting, that would put my pill count up to 10 a day) The biggest problem right now is that another drug company, the maker of the widely used injection Copaxone, is trying to block it. Read about it here and here.  'Citizen's petition' my arse. They're scared because they know people will leave the needle for a pill. Who cares that when the two were compared BG-12 reduced annual relapse rate by 44% for the twice-daily dose in contrast to Copaxone's 29%. Nope. They're worried about their bottom line, while I'm worried about trying to live a 'normal' life.

So I'm waiting and hoping. And how am I feeling through all of this? What does all this mean for me on a day to day basis. Well, it depends on the day. It also depends on if I've remembered to take my pills that day. (I know, I know, but with two kids under 5 things happen) I'd say the toughest thing is the fatigue. There are many days I wake up tired. Not I-stayed-up-too-late-I-need-more-coffee-tired, but taking-a-shower-and-getting-dressed-are-olympic-feats-tired. And caffeine doesn't help the fatigue. Nor does the fact that my 20 lb two year old insist I carry her every where. (And once you pick her up she points and says "dat way!") On good days the spasticity in my arms and legs are a minor annoyance. On the bad days it's so painful I want to cry. When in a relaxed state (just walking around or sitting down) I find that I revert to holding myself in a tensed hands are clenched and my legs/feet held in a position that stresses the muscle. I have to consciously relax my hands and feet all the time. On good days I barely limp...on bad days it's more noticeable. I'm not Quasimodo quite yet, thankfully. My balance is poor. It doesn't take much to send me reeling. The best way to describe it is that it feels like my inner gyroscope is broken. I have a cane that I use occasionally. Typically when I am out and don't want to look like I'm drunk. It also comes in handy at fiber festivals with the uneven ground and crowds, (nothing like a stick to beat them back from the last two skeins of sock yarn in your favorite color way.)

Since stopping the infusions my immune system has been haywire. Since the new year I've had two UTI's, chronic sinus problems, a day or two of vomiting, two bouts of pink eye, a severe sore throat and a 'cold' that had me bedridden for a full day. I'm often asleep shortly after the kids go to bed (hence the complete lack of blogging and crafting). There have been nights I've been out before they have. I know one night I fell asleep during the dinner hour. Another night when the Husband was working late I was so exhausted I was letting the kids watch a movie in my bed. I put Little Miss down and then laid down with Little Dude to watch the rest of the movie. Next thing I know he's asking me how to turn off the TV, which he does, then he goes potty, turns off the light and crawls in next to me. (Is this kid awesome or what?)

Brain wise, I've been having trouble focusing and finding the right words. I could always tell I was due for my next infusion when I started struggling for nouns. My husband tends to get impatient while I am mentally searching for words and tries to fill in, which just screws me up. I know I'm bad about interrupting people when talking but I know if I don't get the thought out in that moment, it will just be gone. (so please be patient with me. I'm not trying to be annoying. I just have holes in my brain). And there are other things I have to deal with because of the stuff, trying to wrangle my medications (8 pills a day....that reminds me. I gotta call that refill in), finding shoes that won't trip me, catheters, doctor's appointments, needles, insomnia, trying not to trip while carrying a child, trying not to trip while carrying a bucket of paint (did that on the drop the other day....thankfully it was on a part I had not painted yet.)

Wow this is a long post. It's not meant to be whiny, or please-pity-me. I just wanted to give a small slice of what it is like and what is going on. And why I've not been here.And now that you're up to date with all of that, we can get on with the crafty stuff (and the cuteness. Oh wait till you see the cuteness)

ok. off to bed.

Ten on Tuesday

10 Reasons You're Happy it's March

I have many, many reasons I'm happy that it is March.

  1. What is that big, bright, shiny thing?!?!? OMG!! IT'S THE SUN!!!! I am far more productive when it is sunny out. One wonders if I would have been half as depressed as I was in my formative years if I didn't grow up in a place where the sun is lacking for weeks at a time. Along the same vein, would I have MS as well?
  2. The new MS therapy I am waiting for is *suppose* to be released this month. (more on that later)
  3. My Little Miss turns TWO!!  o_O
  4. We are finally working on my set design and the stress and angst are coming to head and becoming something. I'm not sure if it will completely fail or be a success but the waiting is over.
  5. I will finally be getting paid for the above.
  6. I am only wearing about 5 layers of clothing to work, instead of 17. 
  7. The potential to open the windows. Oh how I'm aching to open the windows and clean out the house.
  8. We can start taking walks around the block again. The kids need to get out and burn off some energy and the exercise wouldn't hurt us either.
  9. Flowers. (perhaps not but there is always the hope of). I try to remember where the crocus are in my yard and keep an eye out for them.
  10. Girl Scout cookies. (come to me my Thin Mints)

Sunday, March 03, 2013

This means war...

March is named after Mars (Ares) the Greek god of War and it seems very fitting to me. I'm feeling beat down, worn out and dammit I'm ready to fight back. 2013 was suppose to be better. I gave the year January to shake off 2012. February just ended up being a horrible month...we had a blizzard, I was sick (in bed all day sick), my husband worked crazy long hours, deadlines came up harder and faster after the shut down from the snow, both my kids got sick while my husband was 3000 miles away for work, and I didn't make it to knit-nite once the whole month. And to top all of this off, I am between treatments for the MS and feel like complete shit rather ailing.

All that being what it was, my plans for Finishuary were a failure. I was either too tired, too sick or in too much pain to get much crafting done. I did finish one of my father's potholders and almost finished another...until I discovered that the second one was too small. Frogged that and I have now nearly completed the second 'corrected' potholder. There is a rush on these since Dad so graciously pointed out that he burned himself the other day because he only had one of the good potholders (and it was all my fault). I told him that it was his fault for being a dumbass who touches hot things. Can you feel the love? I have enough yarn to make him one more, which will give him four in total. Though I ran into a minor snag yesterday with one of them. I've been trying to work on these everywhere and brought the project to the library on our family excursion. It gives me something to do while I keep eyes on two kids on opposite sides of the room. When I returned, it seems that some of the yarn was hanging out of the diaper bag when it was unceremoniously dumped on a chair in the living room. When I went to gather said project back up during nap time I thought it was odd that there seemed to be an end hanging out of the bag. I was working directly from the too small potholder to the correct one....there should have been no yarn end.
Then I looked closer....
and noticed the frayed nature of the end....
and the dampness of it...
and the compete absence of my fat black cat. The one that is the Brain in my Pinky and the Brain duo of pets. Yeah. That one.
It was fixable but rest ye sure that I am plotting my revenge.

I did manage to get some quilting done over the last month as well. The T-shirt quilt from hell has all it's machine quilting done. I just need to do the hand quilting in the squares and then the binding. Why, oh why am I hand quilting the squares? do you ask. Because I don't have a long arm sewing machine and it will be much, much easier to do the quilting pattern in there by hand then on my machine.

With spring on it's way, things are starting to look up. My husband's schedule is looking better for a while. Next month I (hopefully) will be starting a new treatment, and my design will be going up and not consuming all of my life. I have lots to write about and lots of ideas for changes. I hope you will all forgive the lack of writing and the many unfulfilled promises of regular blogging. I want to keep blogging, I just need to figure out how to fit it into the new 'normal', especially when that 'normal' keeps changing. 

So get your battle dress on...we're gonna kick some arse!