Wednesday, June 30, 2010

MS...stands for mighty scared.

June Challenge (day #30)

a few of you might have noticed me mention a health situation that came up recently. i don't really talk about it much, because it's hard to come to grips with it.

i know to some of you 30 is old. 34 is ancient. but to me, i'm still young. too young, to be diagnosed with something that pretty much will effect me for the rest of my life. it's things like this, that you really don't think about till it happens to you. july will mark a year that i've knowingly lived with MS.

it's been a very hard year...

MS stands for multiple sclerosis and it is a complex disease of the central nervous system (brain, spinal cord, and optic nerves) characterized by relapses (neurologic symptoms which appear rapidly but often improve over weeks or months), remissions and often progression of disability over time.

my condition started off 4 years ago. first with vision lost in one eye, which was written off as a fluke. then it turned into migraines. very painful migraines. it was the first time i had to go on steroids. which tore my body up. made me gain tons of weight, which was a very unpleasing situation. while getting a steroid treatment my nurse said, "did they tell you why you had vision lost?" i told her no. so she casually mentions how most people she comes to give treatment to, with vision lost have MS. that totally fucked me up. i went to my dad (who is a doctor), he told me not to worry about it. i asked my neurologist who had me on the steroids and getting the various test, she said don't worry about it. my vision came back almost completely, everything was ok. the thought stayed in the back of my mind, but i didn't think about it anymore.

that is until my vision went out in my other eye 2 years later. i got put on steroids again. and it did even more damage to my body. the weight came, but didn't go due to the fact that i wasn't taking the "crazy" medication that was prescribed to me the first time. that shit made me lose so much weight i was looking like 50 cent looks now. so hence all my, "i need to get in shape" rants that i stay on. because for the first time, the guy who never had to work out, never had to worry about what i was eating...has to start doing that. and it's not easy. after getting my MRI's, the doctor. same neurologist tells me i have MS. my dad, tells me i have MS. everyone but my mom is convinced that i have MS. she's so not convinced she gets me fired from my doctor cause she's asking for a second opinion. and yes i really did get fired from my doctor. she sent me a letter maybe 2 months AFTER she put me on my therapy.

imagine, someone telling you..you have an incurable condition one day. then imagine someone telling you, knowing you're deathly afraid of needles..that the only therapy is injections. and that taking it will NOT stop you from feeling bad. it will just stop the frequency of you feeling bad & may NOT prevent it from developing into a worse disability. there is no guarantee. imagine finally agreeing to start therapy, that you have to take an injection everyday for the rest of your life. then a few weeks into you get a letter telling you they will no longer be your doctor, here's a list of people you can go see.  then they send you to a clinic full of people in wheelchairs, with canes,etc. every time you watch a show and someone has it, it's always in it's WORST form. truthfully there are tons of people living with MS, but the one's who are doing ok...you never know. you only see the fake people, with the fake smiles, and fake words of encouragement on the promo video for your injections. yanno it's fake, because when you actually start taking the injections it's burning like hell. there are lumps, bruises, & different reactions to it that no one really tells you about.

it really sucks. the idea of potentially developing a disability, really sucks. a lot of days it's not on any one's mind but mine. and that REALLY sucks as well. i try just as hard as everyone else, not to think about it. then i remember i have to take my damn injection. now every time i'm sore, stiff, my knees hurt, my eyes hurt..i dunno if it's cause i'm getting old, worked out too much, got something in my eye or because i have MS. every time my legs go numb, i dunno if it's because of how i was laying or the beginning of a disability. it's a constant state of scared. and i know, everyone says, trust. believe. have faith. but it's much easier when it's not you. i wish it was not me. but it's something i'm dealing with. even saying it. writing the words right now, is more than i could have done a year ago. so i guess in time, it'll get better. one year down....too many more to go (hopefully).

10 comments:

Monique said...

Wow. My heart goes out to you because at the end of the day, you are a fighter. I know this disease isn't easy, no one said it would be, but you do give others hope that they can have half the strength you do. Keep pushing.

DaBossBitch said...

I think it's great that you were able to share this. It's definitely a difficult thing when people say the "trust. believe. have faith" stuff. Because you probably want to respond with all of the feelings you just told us. Sometimes you need to a place to say 'This Sucks' and I'm glad you have that place here!

I now it sucks, but we are still gonna trust, believe & have faith with you. (Giving you one of those big'ol grandma rocking back and forth hugs)

Beyond Danielle said...

that's so sad, I almost cried

sunshinestar110 said...

I really wasn't ready for this blog at all but i'm glad you did it. I know we fight and joke alot but at this moment its all out of the door and my heart and prayers goes out to you. My god brother also has MS and I have watched him go on an emotional roller coaster about the MS and injections which he hates with a passion. He keeps himself in very good heath and even changed his diet after he read some study but he know its all a chance game. You are a fighter and know you will be ok....So I'm about to end this because it making me get real emotional about the situation!!

luvlymskrissy said...

This hits way too close for me. I don't even wanna get into it really. I hope ur MS stays at a point where you can manage it. Gonna keep u in my prayers buddy.

Isis said...

well, of course i hope it doesn't progress...i will definitely keep you in my thoughts/prayers though. congratulations on 1 year down! keep your head up...i can't imagine how it must be when you have those "down" times...but you'll get through it like you've been doing.

jazzyjaz said...

This just hit me close to home my father has MS and everyday is a battle for him but he endures it all with strength and much faith. He hasn't showed any real signs of it but he keeps himself very very healthy and active. I pray and hope for nothing but the best for u!!!

★Starrla Monae☆ said...

I admire you for sharing such a difficult story with us. This post was definitely not expected but I'm glad you opened up and enlightened us about your journey. You now have more people praying with and for you than you probably could have ever imagined.

tha unpretentious narcissist© said...

i thank all of yall for your kind words, comments, prayers. i appreciate it.

@monique: thanks. i'm trying to push like a bum with a shopping cart going up a big as hill. lol.

@dabossbitch: aww thanks, those are the best kinda hugs. and i do trust, believe & have faith..just easy fall into that place where it seems overwhelming.

@beyond danielle: i wanna cry too...but mostly cause my head is killing me now..

@sunshinestar110: wow, small world. this stuff is so new to me. i think knowing i have something that makes me tired & sore..has me more tired & sore now because it think of it as a symptom instead of trying to diagnose it away to something else. which just ultimately brings me down. it's real hard dealing with it on a everyday basis when i think about it. sometimes i wish i didn't even know i had it.

@luvlymskrissy: thanks, and trust i understand.

@isis: thank you. and yea the "down" times are plenty. mostly cause it's still new. and it's more self loathing then anything else. my relapses are visual problems and extreme eye pains, mostly. kinda feel like i'm having one now. but eh..i think getting depressed when i feel bad is the worst part of it. but i try to always roll that into something else. and not to be as negative as i feel sometimes.

@jazzyjaz: thanks. and again small world. i'm working on the healthy part. i'm trying to stay very active. that's why i've been killing myself with all these rec leagues. i know soon i'll have to change my diet and start doing other preventative things. but it's hard sometimes. i think the first few months, years, episodes are the depression era. i think once i get used to it. once i claim it more..it'll get a little easier. at least i hope.

@starrla monae: thank you very much. didn't mean to throw it on yall. i've been wanting to share it, but really just haven't been able to. only my closest friends & immediate family know. it's just not something i've been comfortable saying or talking about.

tha unpretentious narcissist© said...

i thank all of yall for your kind words, comments, prayers. i appreciate it.

@monique: thanks. i'm trying to push like a bum with a shopping cart going up a big as hill. lol.

@dabossbitch: aww thanks, those are the best kinda hugs. and i do trust, believe & have faith..just easy fall into that place where it seems overwhelming.

@beyond danielle: i wanna cry too...but mostly cause my head is killing me now..

@sunshinestar110: wow, small world. this stuff is so new to me. i think knowing i have something that makes me tired & sore..has me more tired & sore now because it think of it as a symptom instead of trying to diagnose it away to something else. which just ultimately brings me down. it's real hard dealing with it on a everyday basis when i think about it. sometimes i wish i didn't even know i had it.

@luvlymskrissy: thanks, and trust i understand.

@isis: thank you. and yea the "down" times are plenty. mostly cause it's still new. and it's more self loathing then anything else. my relapses are visual problems and extreme eye pains, mostly. kinda feel like i'm having one now. but eh..i think getting depressed when i feel bad is the worst part of it. but i try to always roll that into something else. and not to be as negative as i feel sometimes.

@jazzyjaz: thanks. and again small world. i'm working on the healthy part. i'm trying to stay very active. that's why i've been killing myself with all these rec leagues. i know soon i'll have to change my diet and start doing other preventative things. but it's hard sometimes. i think the first few months, years, episodes are the depression era. i think once i get used to it. once i claim it more..it'll get a little easier. at least i hope.

@starrla monae: thank you very much. didn't mean to throw it on yall. i've been wanting to share it, but really just haven't been able to. only my closest friends & immediate family know. it's just not something i've been comfortable saying or talking about.