Guest Writer - My Disease (Not Ebola) 03/03/2010
 I’ve got some big ass shoes to fill by doing a little guest writing and I’m a little bit intimidated. Sometimes, I’m not the cleverest of folks, but get me on a good day and I can get a few laugh/confusing looks. I’ve been a very bad girl lately. I’ll be honest about it. Honesty hurts sometimes and it isn’t always easy and neither is living with disease. Sometimes, it seems like it’s getting harder (That’s what she said, that’s what she said!!). First of all, to start off with my bit of truth telling, I will say that most days, I ignore the fact that I have an incurable disease. I’ve just made it sound like I have Ebola, haven’t I? Well, I don’t. I don’t do my Rebif injections and I act like it doesn’t exist. Which is wrong. Very, very wrong, I know this! It’s not something I do intentionally. Would me saying that I’m a forgetful person make it sound any better? Well, I’m not that forgetful. Like I said, I’m going to tell the whole truth and nothing but the truth. I suppose I should introduce myself. I’m Danielle, also known as D, Woody (Please don’t ask), Tommi D and Yelle) and I’m 25 and getting older by the minute. Yes, I will be 26 in April and that disturbs me a little because I feel 18, MOST days. I was diagnosed with RRMS in May of 2008 (for those of you who aren’t hip to the MS lingo, that’s Relapsing Remitting Multiple Sclerosis). I went to an awful neurologist for my very first ever neurology appointment and when I say awful, I mean awful. I was alone. I was Very much alone at that first visit and I was scared to death. I had all the tests a person with numb hands and legs gets, but he said I was fine and maybe I was imagining. Which means, I have one hell of an imagination. This being said, I must also have super powers because when I bent my neck a jolt of what felt like electricity shot down my spine. Was I turning into one of the X-Men characters? Ugh, if I were only that lucky. I had MS, but it wasn’t relevant enough for him to care because he had other patients who were worse than me at that point so I was at the bottom of his list. Long story short, I now have an amazing neurologist who I haven’t seen in about a year and a half. I already said, I was a very bad girl, so for those of you who are thinking it, you’re correct! It was only 6 months, from the time of the start of my symptoms until my diagnosis. My mom was with me. I heard the words “there are several new lesions and I’m afraid you do have Multiple Sclerosis.” LOUD AND CLEAR. I didn’t cry. I listened to him talk about how I was going to have to inject myself and I could have kids if I wanted and this wouldn’t take away my life. I listened, but I was more worried about what my mom was feeling sitting next to me. I knew all along. I can google. I have googled and I still google all the time. I’m a google queen. I started Rebif soon after because as he explained it, normally I would have a choice in the drug I take, but because of the amount of lesions (7 new brains lesions, 2 of which were new…GO ME!) he wanted me on a strong drug. Here we are today…March 3, 2010. MS awareness month. I’m aware of my MS DAILY. I don’t always tell anyone when I’m feeling terrible or tired or just really damn irritable because what good would it do? Wanna hear some more truth? I have wonderful people in my life. When I first met my boyfriend, Josh, I didn’t want to keep things from him too long because I knew it would get serious and I thought who am I to not tell? I told him and he researched. WOW…I have someone researching for me. His parents came next and I liked them, I really, really liked them and I didn’t want them thinking their son would be “stuck” as I like to call it taking care of me, so he told them. They wanted to learn too and even went to an MS event to hear about new treatments etc. Oh what a feeling! I could say so much more, but I think I’ve gone on for long enough. I need to do my injection tonight. It’s been almost two years and I still hate it. You wanted truth right? Josh holds my hand most nights when I actually do my injection. I come close to tears every single time. I’m tough. I like to think so at least. I am 5’3 or 5’4 of bad ass… .I’m not sure which and honestly I’m really not sure I’m that tough, but I’ve hung on this long and I’m okay. I met Jackie and Dana through this blog and I’m so glad I did. They’re amazing and I get a laugh, a much-needed laugh from them daily. I feel for Jackie because she’s going through so much and it makes what I have to deal with seem like nothing. Jackie you are strong and funny and you are going to kick UC in the throat! So, for now, I’ll leave you with a few facts about me. My name is Danielle. I have MS. My 2nd toe is longer than my 1st toe (SHUT UP). I am addicted to wine and chocolate and anything with carbohydrates, so much so that I do a happy dance when I eat/drink these select items. I like ignoring that I have MS sometimes. I didn’t say it was good, but I’m being honest. Life goes on and I’m learning that it HAS to be enjoyed. I’ve also found it takes a hell of a lot more energy to be mad than to just give in and be happy. Someone very special told me recently, “Why can’t you just be happy and look at the good?” I can and I will. Sometimes I just need to remind myself. Oh and also, I’m about to get insurance again. It’s tough not having insurance, kind of like living in the wild. Like I said, I’m tough and I’ll make it though until I get insurance. Like a good man named Dwight Schrute once said, “In the wild, there is no healthcare. In the wild is “Ow, I hurt my leg, I can’t run.” A lion eats me. I’m dead. Well, I’m not dead, I’m the lion and you’re dead.” C’mon healthcare! PS: I’ve never blogged before so please forgive my back and forth on things. I type as I think and sometimes it’s just plain retarded. CommentsDana Wed, 03 Mar 2010 10:21:05 Dear Danielle, Danielle Wed, 03 Mar 2010 10:31:52 Dana- Josh Wed, 03 Mar 2010 10:38:40 Ya...that picture definately suits the blog and D. If yall only knew how many times a day that face is made... Danielle Wed, 03 Mar 2010 10:42:47 this is true and thank you very much Anne! Val Wed, 03 Mar 2010 18:55:08 awesome post. I'm turning 26 this year and Rebif makes my life interesting. I especially loved your xmen reference because I totally made references to the Matrix (thank you ON) during the six month period that was my dx. yay guest poster! and woo hoo MS acronyms. I'm such a geek. Danielle Wed, 03 Mar 2010 19:38:43 Val- Ramondo Thu, 04 Mar 2010 21:26:51 All I can say is that you did a great job! You let your personality shine in this blog post and that makes for good stuff. Stay strong and always KEEP SHINING!!! Danielle Fri, 05 Mar 2010 09:55:10 Ramondo- Connie Fri, 05 Mar 2010 19:39:59 I am so excited to know I am related to someone who is part of the x-men, you are a mutanat and mutants are awesome! I think your niece and nephew are going to love you even more because these super powers make you even more awesome!! I love you, keep sharing and I will keep listening after all it's the least that I can do. Tue, 23 Mar 2010 15:41:01 hi Leave a Reply |
