California, Pasadena -- Walk MS: Greater Los Angeles 2014
Team Big D
My Extremely Non-Academic Defintion of Multiple Sclerosis:
In the most SIMPLE and non-scientific way I can describe it: Multiple Sclerosis is when your immune system makes a mistake and attacks the layer that surrounds the nerves in the body called "myelin". (Anyone being taken back to Mr. Bovi's 8th grade science class yet?) This attack really stinks because it causes scars to form on the nerves, which we (hopefully) know send information through the body. Because messages that are being sent to and from the brain are interrupted by these scars, the body will react with different symptoms, depending on the location of the scar. When someone gets an MRI of their brain and spine and white polka dots (lesions) show up, they are diagnosed with Multiple Sclerosis, or MS.
(Don't use my definition in any essays you write...you're better off sticking to Wikipedia)
So why does this matter to me..
Last year during July I started to find it extremely hard to balance and walk (Yes, while I was sober)...My legs and feet felt like they fell asleep and refused to wake up. Over the next few days I lost the ability to write, let alone hold a pencil... I constantly felt like my world was spinning and blacking out. My skin felt like it had a bunch of Saran wrap all over it, and you know how annoying that crap is. But we all know what a stubborn, pain in the butt I am.. So I kept going to work and school. As a few more days passed, I became unable to drive and my entire right side went "dead". My arm and leg basically stopped working. I can pull off almost any look, but dragging a leg around is something even I couldn't make look cool. After work on July 15th my mom drove me to the doctor to figure out what the heck was going on. Insane disease names were thrown out when I explained what was happening (pretty sure they probably just made up a few) and I was inevitably sent to the hospital straight from there.
After hanging out with the lovely crowd at San Antonio for a few hours, I was finally admitted. The next few days consisted of me being wheeled around in a wheelchair (by the way, whoever decided that hospital patients would enjoy having warm blankets placed on them wherever they go..props to you!), making a game of stealing hospital socks from every department, being stabbed around 973 times for blood, a spinal tap, a 3 hour MRI of my brain and spine (after being drugged up with a lethal dose of some magic juice to help me pass out.. Shout out to THAT nurse), and disgusting hospital food, it's safe to say I was ready to go home.
My mom, sister, Kels, Cameron and I were hanging out in Club Desiree (AKA: my shared hospital room -_-) on Wednesday afternoon when Dr. Desai came in with some other official looking people and gave me the best and worst news of my entire life. Best news: I was going to be freed from that place and be able to shower soon. Worst news: I was being diagnosed with Multiple Sclerosis.
The next few weeks consisted of me being injected with an IVIG drug for a few hours a day at my house while "Dan the IV Man" tried to make awkward conversation with me about how most people just sleep while they are getting treatment (Hint Hint Dan: I would have loved to sleep instead of talk to you), relearning how to walk, relearning how to strategically get a majority of the food on my fork into my mouth, trying to get homework done (didn't happen) and a LOT of sleep.
After a few weeks I went back to work at Toby's (someone has to get you hussies drunk and fed), work at Chaffey, back to school and I also started working on my internship hours while battling my plethora of symptoms that are common with MS.
Some of the battles I've punched in the face so far? Weeks of having double vision, random numbness and tingling everywhere, stabbing pains from my clothing touching me (or sometimes nothing at all, wth?!), incredibly unpredictable bladder urges, tripping and falling, extreme cognitive and speech problems, depression, headaches, sensitivity to heat, insane exhaustion and not to mention it's pretty darn hard to keep my weave looking fresh when I have no feeling in my hands or fingers.
Fast forward to what's going on now...Everyday I inject myself with this crazy expensive and painful medicine that leaves my arms and legs looking really ugly and bruised. I also take medicine to help me stay awake and slightly more focused. I haven't had an attack or "relapse" as bad as the one in July and I'm making my best effort to live a happy, healthy life in hopes that I don't wind up back in the hospital, collecting socks, anytime soon. But most importantly I make the best effort I possibly can to still be myself and kick life's butt just like I was before. Everyday I feel like I face a new battle, and I never know what symptom will be next. The only thing I do know is that I was given this challenge because I can absolutely handle it.
How Can You Help:
Everyone always wants to know, how can I help? Can I bring over a casserole? As much as I appreciate that.. I don't like casserole.
The BIGGEST way that you can support me is to be understanding. Realize that some days certain parts of my body stop working, that I need random naps and might have to bail on plans, that sometimes the words that come out of my mouth get really jumbled and don't make sense, or that I might want to sock you in the face for touching me on a sensitive-skin-day...Know that I trip over cracks in the sidewalk, that I have more mood swings than the average woman (MIND. BLOWING. I know...Good luck to my future husband) and that sometimes Luke Bryan wants me to shake it for him and I just can't. But being understanding and sensitive to the fact that I really am trying my very best to not let this bring me down is honestly what I really need from people.
But that can't be all right?
So if you'd like to help in other, more tangible ways, you can donate to our team for the Multiple Sclerosis Walk. You can donate your time and walk with us on April 6th, or donate funds that will all go to the MS Society. (No, I won't be using your money to pay for my student loans, but those contributions are always welcome as well) We are asking that all of you who'd like to walk either donate or fundraise a minimum of $100. If you don't want to donate online and you'd rather donate in cash let me know! We want to raise as much money as possible for more research to be done so that we can one day live in a world where there isn't MS.
So please hustle your mom, your boss, your siblings, your drug dealer (small, untraceable bills please) and anyone else you know to please help us reach, and exceed our goal! Every little bit counts and I truly appreciate the great support system of people who have already told me they want to help raise money!
I am participating in this walk because I know how fortunate I am to be one of the people strong enough to gain back my ability to walk, run, think, and laugh. I want to do this walk as a reminder to never take for granted the most simple things in life. These things can be taken away from anyone tomorrow, so enjoy today! :)
This is a link to our team page if you would like to join:
Update of what's been happening:
(March 2, 2014)
I wanted to share some updates on what's been going on lately. After a stressful first couple of weeks of the year (Anyone who has ever had to deal with changing insurance and doctors will be able to feel my pain), I was finally able to get all of my medicines set up and I'm back on all of them! I never thought I'd be excited to start shooting myself up again, but life's a little different these days.
After switching to a MUCH better neurologist (who has a really fancy office with candy everywhere, by the way), I was sent off for more tests. Last Thursday he reviewed my latest MRI and told me that there hasn't been any significant changes in my brian or spine and that the treatment seems to be working so far. Can I get a "Whoop!! Whoop!!"?!?!?!
Over the last few months I've been feeling fairly good! I finished my masters program so now I am officially: Desiree Jones, M.S. - Ironic much? I was also able to run the Huntington Beach Half Marathon at the beginning of last month, which was something I had been wanting to do before my diagnosis. It was my first (and last...I like running because I'm cheap, and it's free. Who knew those things cost so much?) and I am pumped that I had my friends and family there to support me. Other than that, I've been dealing with seemingly mild symptoms (in the grand scheme of the possible symptoms) so I'm feeling good and incredibly grateful!
Also, I've been contacted by the National MS Society and after reading my story they said that they wanted to share it with others! So keep a look out for my face showing up in your email or mailbox. I'm amazed that people I've never even met find my story to be helpful to others, and even if it only helps one person..I think I've done my job!
This fundraiser has been completely eye opening. I never, in a million years, would have thought that we would be able to raise even close to this amount! I am BEYOND thankful for everyone who has donated and am so excited for the things the society will be able to do with the funds we've raised! Thank you so much to everyone who has helped or contributed, and hopefully we can raise even more over these last few weeks!