My First Year with MS

January 20th, 2012

This is the last picture taken before I was admitted to the hospital. I took this picture to show Chris how much snow we still had at home. He was living in Nevada at the time. We had lived apart for almost 4 months at this point.

 

January 21st, 2012

 

This is the first picture taken after I left the hospital. Sixth Nerve Palsy, Optic Neuritis, whatever you want to call it, my left eye wasn't working. The doctor told me I have the signs and symptoms of Multiple Sclerosis but I need to go to the Neurologist to confirm. It's around midnight and I am on the phone with Chris in Las Vegas. He is freaking out. I had Jessica take this picture to show Chris just how okay I was.

 

Since that day I have had two MRI's, an Electromyography and Nerve conduction study, numerous doctors appointments and many questionable moments. I have learned how to give myself a subcutaneous injection. I know how I feel when I am on or off my meds. I have experienced the major side effects of them including blacking out, falling and having a minor seizure. Thankfully Chris was there for that one. I have endured the minor side effects, including giant raised welts like this one.

 

This one is my thigh. I will spare you the details of the ones on my hips. I outlined the edge in pen so I could monitor its growth. This is roughly 5 minutes after injection.

 

I know which leg is my lazy leg. I know how to shake the feeling back into my hands when they go numb. I know how exhausting the heat can be for a person with MS.

 

 

Even in the air conditioned apartment I used a lot of ice packs. I would sit at the bakery with them tucked down my shirt on my chest and lower back. Chris thought this one was particularly funny one day.

 

 It's amazing how crappy I felt in Las Vegas and didn't realize it wasn't normal until I moved to a cooler climate. Now I mostly feel great. I say mostly because I have recently came to the end of an episode. For all of November and December I had a hard time sleeping through the night. Both of my arms were going completely numb while I was sleeping. Numb doesn't always imply a lack of sensation. Sometimes it's a metric ton of sensations that cause pins and needle pains from the shoulders down. That make it hard to clench and unclench your hands. I wasn't sure if this was MS related or if I was developing some sort of tunnel syndrome. But one day it just stopped. That day was December 31st. I haven't had any pain or numbness since. I haven't changed anything and it just stopped. Sometimes I wonder if my Mom prayed to God I wouldn't be in pain anymore as that was the day of her 49th birthday.

 

But inspite of all this I would call this a banner year. I have learned a lot about myself and my life. I have learned who my true friends are. In fact somethimes I think the reason I haven't made a single friend in the last year is because I already have the best ones possible.

 

 

I have learned to take advantage of every possible opportunity, even if it seems mundane.

 

 

I have learned that you don't need a table and chairs to have the best meal of your life. Every meal you have with the person you love the most is the best. Even sitting on the floor of your entirely empty apartment. ( We couldn't afford furniture yet.)

 

And despite moving between three states Chris and I have both found ourselves working in the fields  we love. I'm a baker now. And for the first time ever I love my job. Not just tolerate it. I love it. It's where my natural talents are.

 

 

 

And a giant thank you and I love you to my wonderful husband Chris. Who is patient and caring and my equally goofy other half. We know there are going to be a lot of twists in our road ahead and I know you are never going to let go of my hand.

 

 

Hitting The Pavement

There is an expression people use all the time to say something is so easy even a kid could do it,

"It's like learning to ride a bike"

Well I'm here to say F that.  Learning to ride a bike is not easy.

Let's rewind back to Christmas time....

I have wanted a bicycle for a long time. And Chris was determined to celebrate Christmas in high fashion this year. There was a ridiculous amount of presents for me under the tree and when I woke up Christmas morning, Santa Claus had left a shiny new bicycle for me.

 

 

A pretty shiny new teal and pink bicycle for moi!

 

I was so excited. I haven't owned or rode a bicycle in over 20 years. Bicycles are so California too and I'm trying to acclimate. Everyone here has one and rides. It's pretty flat here in Sacramento but there are lots of pretty bike trails next to the American river, 2 miles from my apartment.

 

I honestly hate bicyclists though. I curse them all the time and I hate their stupid bike lanes. But this hasn't stopped my desire to get a bicycle to ride next to the river. I fantasize about the spring time and how cute I will look and how fun it will be to ride to the nice Starbucks on Arena Blvd and have coffee with Chris. I want to throw my bike in the back of Ariel Speedwagon and head out to the coast. Santa Cruz, Half Moon Bay, you name it. I want to ride my pretty teal cruiser in the sunshine next to some water. I want to get a basket for the front ( to put my purse or perhaps a kitten in) and ride my bike to the gym. Basically, I fantacize about being an obnoxious hipster.

The day after Christmas I went to our local bike shop and bought myself a Nutcase helmet. After telling the salesgirl that I didn't want a pointy speedy looking helmet she showed me all the Nutcases. They are so pretty! And they cover my whole head! I wanted coverage, not the ability to be a faster moving projectile. I had settled on a pretty flower covered helmet when something shiny and red caught my eye. A Union Jack. I tried it on and knew it was the one. I quickly proclaimed while admiring myself in the mirror that if the Spice Girls rode bicycles, this is what they would wear. The sales girl thought I was going to get the flowery one still. She clearly does not know me. If I have the opportunity to look like a Spice Girl AND be safe, that is win/win in my book.

 

Just call me Sporty Spice

 

Now my bike fantasies involve listening to the Spice World CD while cruising around in the sunshine. Seriously. And when Chris was tightening the nuts and gears and such I played Queen's Bicycle Race for him. I am so prepared to me to be a bicycle racing fat bottomed girl who may or may not be a Spice Girl. Watch out World!

 

But riding bikes alone is boring. So I have been waiting until we bought Chris a bike also to take her on her maiden voyage. (Sidenote: My bike is the only thing in my life I haven't named. I'm taking suggestions.)

 

 

Off to Target we went today. Chris had picked out the bike he wanted over the holidays and luckily it was on clearance when we went to pick it up today. So we picked up a bike rack too. Chris didn't want to pack his bike in the Speedwagon so he installed the bike rack in the parking lot.

 

Oh and dear bike snobs who are reading this, we know it is frowned upon to buy bikes from boxed retailers. The quality is worse and they are hard to have repaired. We did our research. But these are starter bikes for us. We decided we would rather spend our money on cheap bikes to start with and see if we will actually use them enough to validate the cost of a better quality bike. If we stick with this, we will get something better than Schwinn cruisers.

 

After Chris got properly Nutcased ( in a very manly black that he will put ECS stickers on) we hit the road.

 

And by hit the road I mean I hit the road. Hard.

 

We barely made it out of the gates of our apartment complex when my shoe lace got wrapped around the peddle and I screamed "Help me I'm stuck!" to Chris who looked really confused. I tried breaking but my foot was stuck and I panicked and down I went on the side of a traffic circle full of cars. Fuck. My foot was stuck to the pedal and the handlebars jabbed me in the arm pit (which still hurts) and thank god I was wearing a helmet. Best $60 I have ever spent.

 

But we wiggled my foot out of my shoes, unwound them and got the bicycle righted. I was laughing through my tears but I was also embarrassed. I haven't rode a bike since I was about 9 years old but isn't this stuff supposed to come back to you. You know, like riding a damn bike?

 

I got back on the bike and started up the hill. It's a very small hill. It's an overpass really. But when Chris got to the top he stopped to I tried to stop next to him and once again I bit it. This time I fell off the road onto a sidewalk. Seriously. Tears again. Frustration. Proclamations that I am not even qualified to be a 5 year old. And that is true. I never told you Blog readers earlier but I also don't know how to swim. Over the summer Chris gave me swimming lessons. Like Daddy and Me style swimming lessons where I held the wall and kicked. The end result is that I can swim a little now, but not in a strait line. Try as I might my left leg is lame and I swim diagonally. Almost to the point of swimming in a circle. Try to contain your laughter. We will be continuing my lessons in the spring.

 

But now my wheel and handle bars are out of line and my shiny new unnamed Schwinn has big scratches. Oh and I'm bleeding. I scraped my knuckles and didn't realize it and I was holding my aching armpit and dripping blood on my brand new sweater. Day is officially ruined. I just want to go home. Chris fixes my alignment and I cruise back down the hill to our apartment. Oh and my handlebars turn upside down. Not scary at all right? So now I have a broken bike, wounded pride, a ruined sweater and bloody knuckles.

 

We got home and cleaned up. My knuckes weren't badly hurt they just bled dramaticly. I wanted Chris to take my picture so I could post it but he wouldn't take a picture of my face since I was still crying.

 

 

 

 

Tomorrow we are going to get the bicycle repair kit and screw my bike back together. I'm going to get back on that bike and try try again. Chris said he didn't believe me when I said I hadn't rode in 20+ years. We start lessons tomorrow. The cost of my superior Spice Girls helmet is at $30 per accident now. This will go down over the next few weeks I am sure as I am clumsy as fuck. But I'm not giving up on my kitten in a basket hipster bicycling by the ocean dreams.

 

I'm not sure how I became so uncoordinated and ungraceful. But Chris is right, I'm an accident waiting to happen some days. I'm so glad that he is patient and loves me enough to help me brush the dirt off my scraped elbows after picking me up off the pavement. I'm glad he isn't that kind of guy who would forbid me from getting back on my bike but the kind who will screw my bike back together, make sure my Nutcase is clicked on tight and cross his fingers while he sends me on my way.

 

In the time it took my to type this blog, Chris is asking for a do-over on today too.

 

 

Because this bollocks just happened to him and now he has to pull the cork out with pliers.