2.5 years since my last post.

Two and a half years since my last post and this one comes out only because someone remembered off of Facebook that I had this and a friend, newly diagnosed, is looking for positives during this time of fear and stress. 

I haven't posted in two and a half years because I have been living a typical early 30s life. Not without its ups and downs - but nothing that MS has been able to take from me. Every week I still take a shot and every day I still use the bathroom 3 times more than the normal person - and every day I am reminded how worse it could be. 

That itself is a plus and minus. Even if it gets worse... it could still be worse than that! When do I draw the line? I hope to never, I hope that I can adapt to whatever comes my way - but hell I hope it doesn't come til I'm in my 70s. Let's be honest, though, even the smallest things can piss us off. With my MS I have to ask for an aisle seat whenever I can - for easy access to a restroom, I often have sore thighs due to my shots wearing on my muscles, I can't spit out the words I was thinking, I can't remember that one thing I was just supposed to do 1 minute ago... so dumping my head down in my hands and sighing is just about all I can do.

Until my legs stop holding me up, until my eyes darken my world, until I'm stumped with thoughts I just can't articulate no matter what sense it all makes in my head - My life is great.

To the newbies: You may have it harder than me - but just remember that life's struggles are given to everyone indiscriminately and we have to play the cards. Look for the positives - the negatives weigh 100 times heavier but they only hold us down when we let them.

xoxo

MS Walk 2011

MS Walk, 2.0.

 

1.5 years of MS officially diagnosis. Still feeling good and strong. Supported by a huge group of friends and I'm starting to feel stupid for advertising my disease. I feel like I should have a see-able problem... but alas in the world of MS that is not the case (I still want my handicapped parking pass though!).

 

A great thanks to everyone below and anyone that donated. I promise, I'll have a flare-up one day and you'll be happy you walked for me! :)

I am an Atheist with MS: Hear Me Roar, Ramble (and Whimper).

We all take life for granted in some way or another but maybe a certain event changed that in some way. Even after then, even after a big change - location, relationship, medical - we can fall back into a "safe spot" and forgot who we are to the world: nobody. That is not a cynical viewpoint; it is in fact is the most optimistic view. We are all equal in our potential ups and downs. No matter our race, wealth, religion or geological location - we never know what is going to happen. There are statistics and rules, theories and ideas, but all in all - we never know what is going to happen.

Recently I have been thinking about my "non-religiousness". It's helped me cope a lot with everything and anything from biological to emotional. Logic and reason leave no room for 'What ifs' or 'Why mes'... only 'Of courses' with a slight sigh.

I am not heartless or depressed, only a realist and in that comes the reality check that things suck and as an Atheist I have no one to cry/bitch/whine to. Lucky them! And today I was checked into remembering that I have a disease that is beyond fixing by me or medicine. The brain is an amazing thing, something I do not understand at the smallest level. It is the cause and reason of us: biological, intellectual and philosophical. We are only neurological realities. That reality can be changed or dissolved in an instant. That is what I believe in.

MS Update: My day-to-day prior to 08.03.09 was "You only know people that get sick, YOU don't get sick" then on 08.03.09 I thought "MS is going to kill me" (nope), and since 08.04.09 its all: "I have MS now, its Wednesday - gotta take my shot, that bites, ooh my fingers are numb - whatever"... much more comforting even in a new norm. But today, 2.16.11, awaiting my neurologist's call back with my follow up MRIs I let my brain fall to pieces in worry about the results. Why bother? I have a debilitating neurological disease - that is fact. The fact also is constantly evolving into different things. Today I learned my brain lesions are the same as they were 8.03.09 (good thing). I learned one lesion on my C7 is smaller but that the lesion on my C4 is slightly larger. And that I have a new 5mm lesion on my C2. What does this mean to me? That I frequently go to the bathroom more because my body is attacking itself below the base of my skull. Bastard.

Number #2 & Being Motivated

Rambles: It's been since before Halloween that I decided to post. It's been because my MS has been sitting on the back burner. Not that I don't think of it everyday, it's hard not to. I'm always tired, words always come out wrong, it's still there and active - but it's now become part of my day-to-day. Nothing too intense that I can get up and go. I now have a new 'norm'.

 

2011 has begun with the excitement that my FSA account was replenished so I can go get the MRIs I was supposed to get in August to explain the frequent irination and common speaking goof-ups. I always want to restate how I am thankful and feel lucky to only have MS and to only be going through this - not something really scary but this is my world and this is all I have and its very different than before August 2009.

 

Today's complaint: Side effects. I take medication for my medication. I pee every 20 minutes, so I take a pill, Oxybutynin, that has yet to kick in again because I stopped taking it because: My nose is so dry is bloody and crusty all day, my hands feel like a chalk board, if I closed my eyes right now I could fall asleep - though I do always feel like I've got a slight buzz, and though I'm still peeing every 20 minutes... I'm not... well, you know, that other thing. So today I took a medication to deal with that. And now I'm having stomach cramps yet no action. I've decided MS isn't scary, its Annoying and Embarrassing. I've been to the bathroom about 10 times today and it's 2:25pm, 2.5 hours to go. It could be worse.

 

But today I don't want to think about the 5th glass of water I'm drinking that is not quenching my thirst, but is causing me to go to the bathroom even more than I already am, nor do I want to think about the tingling in my sides or the shot tomorrow night... today I want to focus on the overall motivation of my life and think that I am fully capable of getting up and getting on with everything but I'm now. I still have an internal lack of inspiration and that is worse than the MS. I would rather see a psychologist to find the root of my sloth instead of a neurologist to understand the numbing oy my fingertips. *pee break* That is all science, that is my brain f**king up in a whole new way. What in the world has instilled in me this notion of Lazy? I want it gone. I want a shot to take that doesn't cure me, but gets my ass out and about. Where is that disease modifying drug?

 

I need motivation to research motivation: http://en.wikipedia.org/wiki/Motivation

 

 

$40,258.88

I haven't had much to say lately... that is always good, right? No mail is good mail cos that means no bills! Well speaking of bills... I just wanted to recalculate some numbers here. And of course I understand that if I did not have insurance I could have other assistance but if we just look at the rough number for shit's sake... this is what we've got annually for the MS if all symptoms were to stay as they are today:

 

48 shots of Avonex: $38,877

730 pills of Oxybuytnin: $167.90

1 annual MRI vist (2 MRIs total): $1200

2 bottles of Ibuprofuen: $13.98

 

For a grand total of: $40,258.88

forty thousand two hundred fifty eight dollars and eighty eight cents!

 

That means:

a) let's not get any other diseases

b) let's hate the evil world of medicine

and last but definitely most importantly:

c) get back to work Michelle you need to keep your damn insurance!

Another Visit to the Neurologist, Another $25 Co-Pay, Another $500 MRI...

My neurologist wants to see me twice a year - which I suppose isn't the worst, but now it's like the dentist. And at $25 a visit I get talked to, I mean talked over, for only 10 minutes. I feel like unless half my body if numb - why bother? This last visit - yesterday - I got orders for another MRI... boo, that is $500 (deductible)! Grr.

 

Ok - beyond the financials of it all... I've hit a rut. I want to openly discuss my MS and its problems and I wish to have it all positive because that's important. The internet is filled with negative and scary words on MS... and it's not always that way. Yet we must still stay realistic. I have been slapped with "real" the past few weeks. My mantra at the end of the night is "I am not in pain. I am not dying". Now please don't get me wrong, I am fully aware that most people in the world are worse off than me. Homeless, living in poverty, starving, living in war-torn lands, the list goes on and on. I am so thankful for the things I do have. But for my moment of shameless whining: the problems I'm having affect very mundane daily activities and until these were affected I didn't realize how for granted I took the simple things... doing more than 5 basic lunges in an exercise class, going to the bathroom a normal amount of times in a day with no effort, medication side effects (chills, aches, dry mouth, drowsiness, etc...). For all this I am sad. I am pissed. I am annoyed. I am utilizing my right to bitch and complain because my body is attacking itself because it is obviously fucking retarded. We all get this right - use it!

 

My tip to you: Stop and smell the roses, because one day you might not be able to be far from a bathroom long enough to do so. Take Yoga, because you may not be able to use you legs one day. And take advantage of Xanax prescriptions, just tell 'em you're "feeling anxious". :)

MS Math.

What do you get when you add: PMSing, Last weeks shot being a bloody vein-y disaster, MS and an overall annoying day? Tears... everywhere. Wow! This isn't a sob story, don't feel bad for me,this is just a journal rambling.
 
Everyone's life has moments that suck if not days or weeks or years. This is something I want to remind myself of in every moment of weakness I experience. Even when the light at the tunnel is temporarily off and I'm a lost soul moving directionless. If million people have it better than me then 50 million have it worse. Thank you for that! Selfish? Maybe.
 
Last week my shot went through a vein, blood literally squirted up and out of my leg and my gauze looked like the beginning of a promising horror flick. And it was super painful. This week I shook in anticipation of the same thing and reverted to months ago when it took me 30 minutes to mentally prepare to give myself a shot and I was so angry at myself, but I was scared.

So what? In the last month two great guys at my work lost their wives... one in a tragic decade long battle, one shockingly and overnight. This is what's important. Life. My complaints and worries are so laughable compared. The stress that I create for myself could be transitioned into strength and ambition if I tried. Some people actually live a hell on earth. I do not.

BUT If a shot brings you down... there is no shame in hanging your head low and letting a tear roll from your cheek. Your burden is your burden. Gravity pulls heavy and drops tears to where they belongs - to water the soil in which we see all rebirth. Hang your head not in shame - hang it in rest and recuperation for we all have our emotional battles; we are all human. Lost point being: if you are someone with MS newly diagnosed or just with a pessimistic outlook in general finding and reading this: Bitch! Complain! Cry! Do whatever the hell makes you feel good. It's what we do as humans anyways. But let us not lose track of the tiny spec we are on the earth's surface and to sympathize and empathize with others when we can.

You may have heard this saying - an headstone in Ireland reads: "Death leaves a heartache no one can heal, love leaves a memory no one can steal." Life is being able to feel both the good and the bad. We can't have one without the other. Though I wish I could have the faith that there  would be a place where only Good exists after I die, I cannot. But I do bury myself in the enjoyment of all things physical here and now. When I die my last thoughts that follow the escape of my last breaths will be every happy moment I will have had - the smiles and giggles, pure moments of pleasure, butterflies and adrenaline rushes, hugs and kisses, the meeting of a new set of eyes, all the love I was lucky to be in and all the love I was lucky enough to give and even give up.

I breathe to gasp at the new things life throws at me. I hold my breath in anticipation of all thing exciting. I exhale in great exhaustion of being able to be. I sigh with contentment that I am.

I'm off to get a beer... michelle*

One Year Anniversary

So at this time in the morning 365 days ago I was driving to Joel's house. He was going to take me to my 3rd MRI. I take the Alprazolam during the MRIs, it makes for a much cozier hour or so. On the freeway my doctor called and I picked up and told him I was on my way to the MRI place. He told me there was no need, he could see the lesions on three specific places on my brain and spine. It's official: I have MS.

I start crying. I have no idea what this means for me but I do not I have an incurable disease and that I can't walk right and that half my body is numb. As I'm crying and driving to the freeway I try to clean myself up. Since I'm already so close to Joel's house and having a breakdown I figure it's best to get there and calm down before I drive back home. I walk in and Joel's ready to go, and then I just start bawling and he gives me a hug. And I cry in his arms for a minute or two and that is my reaction to my new world.

"Life is not the amount of breaths you take,

it's the moments that take your breath away." Alex Hitch Hitchens

One year ago, already! Insane. But what I have learned in one year about the disease, about me, about my life - is that I am surrounded by the most amazing peple. People that have been around me forever, people that I've just met but our souls have seem like they've known each other for years, people that have come and gone in my life but have shown and offered their support to me without hesitation. It makes me ridiculously humbled that I know such rich and caring people. It makes me fill with pure happiness. For life is who we are with and what we do with our company.

I love you all, you know who you are.  

Murphy's Law.

So of course, not days ago, I mention how this MS is nonexistent in my life. And last night, shot night, I get a lil scare... just to keep me in check I suppose.

I thaw out my shot as normal and I'm putting the needle on, a bti shaky - it's hard! They're so small! I'm nervous that maybe I touched sterile to non-sterile, but I'm pretty sure I didn't. I'm also pretty sure that if it was complicated for people to keep clean they wouldn't allow us to stab ourselves with needles in our own homes. That shot goes in and - OW! Particularily achy... sigh*. Not new, sometimes it is, sometimes I can't feel a damn thing. But the next 30 minutes is that weird part. My right leg (shot leg) tenses up, almost numb but not. A bit tingly, but not really. And it rides up to my lower thigh. Because it happens right after my shot my head thinks "Staff infection!" I don't even really know what that is (http://www.staffinfection.net/). I know it can be bad though. So I tell Jaime - the roomie - that if it gets worse I'm going to the emergency room (oh I'm a bit anxious in my natural state... I have the worry of about 20 people built into my lil head). Long story shot - I woke up feel fine. But I felt "checked" by my MS and remembered last year, exactly this time of year I had no feeling in my left leg and I walked like I was drunk. And that happened overnight.

What is going on?! Anything?

Well to be honest I am very excitied to write this update... but I must admit its sort of sad not having things to blog about. Maybe I will get more involved with MS Awareness and new medical findings and local happenings?

Anyhow, here's the deal: I am getting so good at my shot it's ridiculous. I really know how to fend off the side effects, and I rarely get them bad enough to make me think about them. And I've had only MINOR numbness here and there and maybe MS-caused fatigue. I'm really excited to type that all because August 3rd is not far away and that was my offical date of diagnosis and I am happy to say that all my fears from last year have been settled my explanation and research and stories from others.

<3 hugs and kisses from a mildly and practically unactive MS world, michelle*