Diagnosis: Multiple Sclerosis

video from World MS Day 2009

Some days are hard, others are almost normal. Since I became ill last year I have wrestled with so many ideas and emotions. The doctors were optimistic that I would slowly improve and see the end of my neurological troubles. I tried to believe them because of the hope they offered but I was never quite able to. I was thrilled when I moved from walker to cane to walking unaided but I knew in my heart that I hadn't heard the last of my illness. Unfortunately, I was right. Although I am one of those insufferable people who love being right, it was the emptiest of feelings.

In May I got sick again, I had a second attack. At first I tried to give other explanations for my symptoms, perhaps allergies or some sort of sinus issue, but as my eyes began to hurt so much that it was better to just keep them closed and my body ached to where I couldn't get out of bed for 3 or 4 hours in the morning because I just couldn't manage to sit up, I knew it was time to see my neurologist. On the day of my appointment for a new MRI the tremors began in my right hand. It was so demoralizing. I had worked so hard to be healthy and had thought I was succeeding and all of the sudden I couldn't write my name without my hand shaking so badly that I looked like a drug addict. My neurologist diagnosed Multiple Sclerosis but wanted me to get a second opinion from a specialist to be certain. After my original attack of symptoms last year and all of the confusion in trying to find the culprit, it was important to everyone that we get it right.

My mom and I drove the 2 hours to the specialist who is highly regarded in our state (someone actually called him an MS guru) for my second opinion. The appointment went well until the disc containing all of my MRI images from the past year wouldn't open. I went home without an opinion and I've spent the past 6 weeks keeping my original diagnosis between myself, family, and a few close friends. I got confirmation that it is, in fact, MS a couple days ago and I've tried to write this post numerous times since then. There is so much I've been wanting to say for so long but was waiting until I was well, it looks as though I should stop waiting for that.

I am in no way happy I have MS but since I have been sick and will continue to be to varying degrees for the rest of my life, I am thankful that what I do have is something well known. There is a lot of research going into MS. I have medication options to help with not only the symptoms but extending the time between attacks. The life expectancy and quality of life is much different than it was 28 years ago when my grandma passed from this disease. The outlook for my life is so much brighter. I am strong and I will be okay.

I've had a lot of time to thoroughly examine many of my thoughts on life and what I want out of it. I'll post more about that and my treatment plan in the future but right now I just wanted to get this out there. I've felt so stifled these past weeks as I kept this news to myself, waiting and wondering, not wanting to say anything until I knew for sure. Having a diagnosis has released me from this burden and given me such peace of mind. Learning of my MS has been surprisingly liberating. Who'd have thought?

Goodbye 26.

Today is my 27th birthday. I've decided to treat today like it is the beginning of a new year, a new era. The 26th year of my life was the most difficult year I've experienced thus far. I spent 11 months of it being ill. I can't remember a single time from 26 where I was happy. Sure, there were glimmers and brief moments of happiness but even those were weighed down with huge amounts of stress, illness, and fear.

My 26th year was full of being afraid I was going to die, that I wasn't going to ever improve, that I would never find myself again, that I'd always be an empty shell of my former self. 26 was terrifying and lonely. It wasn't lonely because I didn't have people who loved me around but lonely because I had to say goodbye to the person that I had been. 26 was the year I had to let go of myself, of everything I was, because it didn't exist anymore. I had lost my identity to my illness.

For my 27th year I hope to find myself. I hope to water what roots of the old me that I have left and to mourn the pieces I won't ever get back. I hope to grow new branches of who I am. I hope to encourage happiness in my life and in my heart. I will get that back and I will let go of the fear I've lived in. 27 will be better, I get to start over.

So please, instead of wishing me a happy birthday, could you just wish me a happy new year, and I will do the same for you.

This is Your Brain on Drugs... CRACK!

Did anybody else watch those awful PSAs in school? My brain doesn't quite look like a fried egg but apparently it still doesn't look normal. Last Friday I went up to Portland for another set of follow up MRIs. A preliminary review of my scans showed that all of my lesions are gone except the one in my cerebellum that has been giving me so much trouble these past 9 months. It is still there but it has shrunk and is pretty faint on the MRI. Awesome news!

and now to take the wind out of my sails

Today I got a call from my neurologist, my scans had been read and while most of what they originally told me still holds true, another random little lesion in my brain is also still present. We've never really worried about or focused on this lesion because I had other, much more concerning lesions giving me all kinds of problems and this one doesn't seem to be giving me any obnoxious symptoms as far as we can tell. We're keeping an eye on it now though because it has become "more pronounced" than it was before. Originally they said I wouldn't have to come back but now they're recommending another set of follow up scans in 6 months.

I'm still taking this as good news. The lesion that was down my spinal cord is gone (leaving behind some spinal cord damage that should hopefully heal over time), as are the ones on my optic nerves. It's just my brain that is still lighting up the scans. Three hours of MRIs isn't fun but I'll take it over a lumbar puncture any day.

I was excited to share my good news with you and had a post written about how I only had the lesion on the cerebellum left and it was almost gone and then I got the call that while the news is still good, it's not quite as good as we originally thought. What a buzzkill. I'm so ready to be done with these lesions. Please think some good thoughts for me that this other lesion will change its mind and become less pronounced or at least that it won't continue on its current path.

Yarn Along

As a kid I was head over heels for the Anne of Green Gables series. In fact, I still am. I re-read the Anne books every year. I also loved the Emily Starr trilogy. I never stumbled across Jane of Lantern Hill though. My school library must not have had her because I'm sure I would've devoured this book just like the others. I only discovered it's existence recently but have already read it twice, both times cover to cover without a break and I feel ready to read it again. 3 times in two weeks, that's totally normal, right? I love Jane. I might even love her more than Anne except I grew up reading Anne so I think she'll always hold a special place in my heart. While Anne is more fanciful, and maybe even magical, Jane has her feet planted firmly on the ground, but has all of the same qualities of L.M. Montgomery's other beloved heroines.

I've been knitting this cowl pattern. I've knit it once before but I, admittedly, messed up the pattern. I decided to knit it again, correctly this time. It's good practice before I embark on more difficult patterns. Check out Ginny's Yarn Along to see what other people are knitting and reading this week.

Parents Trying to get Science Teacher Fired for Teaching Science.

My boyfriend graduated from Dietrich High School (in a class of 12 people). I've visited Dietrich, Idaho, many times and it's exactly as you'd imagine. The population in "town" is more than 300 people but less than 400, everyone else lives out on farms. The largest structure other than the school (which houses K-12) is the Mormon church. There is no gas station or grocery store. There is, however, a tiny bar and a little shop called the Mercantile which sells overpriced grocery items and deep fried burritos. The nearest town is 8 miles away and it has something like two restaurants, maybe 3, don't quote me on that. You get the picture, Dietrich is a hole in the wall kind of town that you drive past and never remember, or more likely, didn't even notice. Don't get me wrong, it's a nice little place, but the emphasis is definitely on "little."

Dietrich High School is best known for their sports, their girls' basketball team just won their 3rd straight State Championship title. Go Blue Devils! Nobody thought Dietrich would be on the national news networks for their science program but, alas, it has happened, in the worst possible way. Some overzealous and not-so-enlightened parents are trying to get one of the high school science teachers fired for {gasp} using the word "vagina" while teaching about the reproductive system, straight from the book, I might add. Oh man, what an unfortunate choice to use the v-word. He probably would've been better off with hoo-ha, or perhaps love mound (I read that in a romance novel once), or maybe cum dumpster would've been more their speed. Cum dumpster, got that one from a thesaurus, those things are so useful.

I would be laughing at this whole thing if it weren't real. I'm curious as to how a person is supposed to teach the reproductive system without mentioning the vag. Should they just glaze over that part?

"You see class, after you have the sex, which involves the penis, and well... the penis, you may or may not get pregnant and have a baby after 9 months, but I can't tell you where that baby would come from."

Magically appearing babies actually sound much better than the traditional, through the vagina, mode of delivery. Sign me up.

There is another complaint about Mr. McDaniel though, and that is that he, "supported a political candidate," by having his students watch Al Gore's An Inconvenient Truth. I think this is probably the actual reason the parents want Mr. McD gone, and the hoo-ha stuff is just a convenient reason to complain. And no, I doubt it has to do with politics either. I mean, Al Gore, seriously? That guy has been irrelevant to politics for a long time, he's been busy inventing the internet (I'm sorry Al, snopes totally has your back). The issue here is climate change, and maybe cum dumpsters. This teacher is teaching about things these parents want their kids either completely left in the dark about or they want to be the only source of information the child has on these subjects, so they can grow up believing exactly what mommy and daddy tell them to. What a great disservice they're doing their children by telling them to not pursue knowledge. Too bad it backfires and now all these kids are spending the next 12 hours staring at diagrams of whisker biscuits on google images (probably) and maybe that one awkward kid is looking at tide tables. And let's face it, in a town of a couple hundred people in the middle of nowhere, kids learn about sex at, like, 10. It's the most fun to be had in Dietrich, except for that one time a guy's dentures fell out at the bar, no wait, that was in Shoshone (the town with gas stations) - scratch it from the record, please.

The nice thing about this witch hunt, if there can be a nice thing, is seeing Mr. McDaniel's former and current students and neighbors stand up for him. They've started facebook groups and letter writing campaigns, they're calling government officials, and they made enough noise that this is now national news, hilarious, sad, pathetic, national news. So G-O, Go Dietrich, Go! Tell those conservative bastards that science is important, that competent teaching is important, that vaginas are important. Tell them that it's not a teacher's job to confirm parents' belief systems to their children. Save your science teacher! The free thinking world is behind you.

I'm going to jump off my soapbox now and return to applying copious amounts of makeup to my forehead to give it the appearance of being round again. I did some damage from repeatedly slamming my face into my keyboard upon originally reading about this ridiculousness.


P.S. What the hell is wrong with people that penis is allowable but vagina is strictly off limits? As if women haven't been oppressed enough, now we aren't supposed to talk about our sex organs...again? This is a discussion for another day, I feel my temperature rising (that indicates I'm about to Hulk Smash) and this after I just got it under control.

We Had Visitors!

A few weeks ago Jake's dad, brother, and nephew came from Idaho for a quick visit. Even though I ran around like a crazy woman trying to get my brother's disaster of a bedroom from his teenage years turned into a guest room, it was so nice to have them. Jake's dad had never seen the ocean so we spent most of our time hanging out at the Pacific. No complaints here, I love the sand and the sea. Unfortunately, due to the fact that I still have trouble with my right leg and with exhaustion, I spent a lot of the time in the car, but that was okay too, I still got to enjoy the view.

We went to beach after beach, enjoyed delicious food and each other's company, and had a great time. We tried to take them to restaurants that offered fresh seafood since they don't get that back in Idaho. A lot of clam chowder was happily consumed. We played and explored and visited. One day when the tide was out the guys went and explored the tide pools. That's always fun and I haven't been since I was a kid. I sat in the car and worked on my knitting, my balance isn't quite up to that adventure yet but hopefully it will be soon.

We had a great time with family and hope they'll come again. It's always a blast to show people around our part of the world, and even more so when they've never experienced anything like it. Watching Jake's dad as he laid eyes on the ocean for the very first time was really special. He was awestruck, and I was right there with him.

Inspired by Miss Dolly Parton.

Recently I found out about Dolly Parton's Imagination Library. Communities across the nation are partnering with Dolly to provide books to low income children in their area. Dolly's library sends these kids one book a month, every month, until the child reaches 5 years old - school age. I think this is an amazing idea. It's been shown over and over that children who read frequently go so much further in their education than those that don't.

I was so inspired by Dolly that I've decided to try to replicate this within my family for my nieces. I've started checking the children's section when I thrift, seeing if there are any books that my nieces might enjoy. I just started this last week so I have only found two books so far but I'm excited to discover more, and to see if I can keep this up and not let my enthusiasm fizzle. Finding books for my newborn niece is going to be more difficult than for her 2 year old sister but I'm excited to try. I know my nieces are going to love this. What kid doesn't enjoy receiving their very own mail, especially when there is a present inside?!

Dolly also has information on her website about setting up an Imagination Library program in your area, if you're interested.

Baby Crochet.

So many loved ones have been having babies lately. First my sister and now a childhood friend. I used to have such a hard time buying baby gifts because I wanted to clean out the store, baby stuff is so cute. Lately, if a girl is on the way, I've been making this sweet little pinafore. I love them and I think I need to adjust the pattern to make toddler sized dresses too. Now to dig up a pattern for the perfect baby boy garment.

Las Vegas!

Last week Jake and I went to Vegas to visit his cousin who lives there and help him to celebrate his birthday. We had so much fun! We went bowling, ate delicious meals, lounged around the house, visited Fremont Street where the boys went on the zip line, and the guys went to the strip. I decided to stay home and knit while they explored the strip because I didn't think my leg was up to that long of a walk after Fremont Street the night before.

It was so nice spending time with family and having a quick trip away from home together. Being sick this summer meant that I was in the hospital for our anniversary and we had to scrap our plans for that so being able to go away together felt like a real treat.



Don't these strip clubs have the greatest signs? I've always been a sucker for bulbs and neons. Love it.

My Kitchen has been Spoiled Lately.

Okay, so perhaps I'm the one being spoiled. We finally were able to buy a dishwasher in December which was really exciting. It's probably my very favorite appliance ever. I hate hand washing dishes. Ever since the dishwasher arrived in our lives, our kitchen has slowly been getting some pretty items that bring a smile to my face.

Jake's mom gave us some fancy knives for Christmas. These Cutco knives are so much nicer to use than my $3 set from Ikea. I especially love the white handles. I guess they had a family conference to decide whether or not I would prefer the white or black handles. They decided on white and I absolutely love them! I went to the local restaurant supply store to get a magnetic strip to hang my knives on. I feel so fancy.

My little brother gifted me a beautiful Gucci watch for Christmas. It was gorgeous but I don't wear watches and I politely asked him if I could return it. He graciously said yes and I was able to pay off some of my medical bills and set a little aside for something I've been wanting for years. I had saved up enough money from tips before I got sick but I ended up spending that money on prescriptions and I was kind of bummed but I knew I'd get my Le Creuset eventually. After returning the watch I called my sister and found that Le Creuset had opened a brand new outlet just a few miles from her home. Since she's the world's best sister she went and picked up this french oven for me and even got an extra discount because of their grand opening sale. I hugged it for so long when it finally arrived at my house. Pure joy.

Lastly, this is what Jake is getting me for Valentine's day. It's from etsy shop Pinkkiss and I love it. I looked at hundreds of spoon rests before discovering this one. It's going to look great on my stove and save me from having to clean up saucy messes every time I lay the spoon down. Thanks honey!

Learning to Knit

Last night was the second week of my once a week knitting class I'm taking. There are 6 or 7 of us in the class and we pretty much work on whatever we want while the instructor walks around answering questions and doling out advice. I really enjoy how casual it is. We're supposed to complete a project by the end of the course, which is 5 weeks. I'm still not sure what I want to work on. On one hand, I want to choose something simple, but on the other hand, I don't want to do something dull or that will take forever to complete.

I've noticed I have a tendency to want to yarn over in knitting like I do in crochet so I have to really watch myself. I wanted to learn to knit so I could make garments but so far, I find that I much prefer crochet. Perhaps I'll like knitting better once it becomes second nature like crochet is. Because of my brain lesion I have short term memory problems so I have to take my big needlecraft book with me so I can refresh myself on knit and purl every now and again. I am excited for the world of new patterns this will open up for me. Now to find the perfect one for my class project. Off to ravelry I go.