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*

Fear Factor.

Don't get your hopes up - Joe Rogan is nowhere to be found, if he raises your hopes.

So... Yesterday I'm having a grand ole day and I get home from work and I'm eating dinner, picking up, watching some tv, working on the computer - all is handy dandy. Then... I turn off the tv, The X-Files - I'm hooked, seriously - and I go from tired to wide awake in 2 minutes flat. I am just tossing and turning. All of a sudden I feel a slight tingle, or maybe heat? - it was hard to say, in my legs. Starting low in my calves, after a half hour becoming pretty obvious. It felt as if a nurse had wrapped a couple blood pressure armbands around each of my calves.

Instantly my mind went nuts worried about the potential problem this could be: another flare-up. It seemed to be intensifying every 5 minutes or so. My first and only flare up started this same exact way: right before bed my legs became as heavy as logs and I couldn't pick them up.

I tried not to cry - I succeeded, mostly. I figured I'd been through this before so it would all be fine eventually. But then I thought about the future and that one day it night not be, or that one day my MS will become more progressive. Though it's typical for it to not be that severe, someone does have it awfully bad - and they don't know it til it comes. It's the fear of the future this disease brings. Especially at such a youbng age - that's a long time to think about it. Shit!

There's a few memories regarding my fear of my MS progressing with an animal show on cable that showed a woman who had MS relatively bad and stung herself with bees everyday to combat the symptoms and another woman that was on a debt documentary that was bed ridden and constantly shaking - she could barely talk - and looked forsaken of life... but the details are unimportant and the jist is in this small paragraph.

...celebrate we will, life is short but sweet for certain...

Running is probably not in the Books for Me

Sad but true.

Last night I told myself: "I'm getting up early and exercising!" This morning at 6am I forced myself up. I do have a roommate, so the living room yoga/cardio videos won't really do. I had to get myself outside!  Interesting... I've never done this before in 29 years.

I tossed on my exercise clothes; surprisingly I have a whole drawer full of em, and went out to the porch. It was a beautiful morning. It rained last night so everything was damp, including the air. It was warm - but a chill was lingering. My goal was to walk, that was it. I had no destination or speed. I hoped to run a block or two in the middle... but I know that you can't go from never exercising to running 3 miles.Not only would I only last about 1 block - I could strain muscles and actually hurt myself.

I still wanted to give the running a shot. I walked at a fast pace for about 5 minutes and thought I'd try a block, a quiet block off the beaten path - just in case I didn't make it far no one would see. And I didn't. I started off with a gentle bounce, pushing myself to go a bit quicker as I could. I couldn't. I feel no numbness, tingling or weakness in my legs typically... but running brought back all the memories of my flare up last August and how goofy I felt just walking. It's a hard to describe because I could run... but I felt weak, as if the next step my back leg would just collapse - though it never did. Also, both front thighs went numb. The straining felt so uncomfortable and the image of what I expected me to look like... made me stop. Why couldn't I just appreciate my goofiness... like Phoebe? Well... because I might fall? Ha.

I instantly hit a mental wall - but I kept walking. My thoughts were not optimistic... "Why even walk then?" "Will I ever build enough muscle to get over this?" "Will I ever be able to run at full speed?" This relates to an experience from last week when I tried to ride my brand new bike to work. TO work, it's a great 12 minute downhill, lakeside jaunt. FROM work... well, the hill isn't exactly Mt. Kilimanjaro - but I could not get up it. Between not being in shape and having this fun little thing called MS... I struggled and sweat - at times my legs just wouldn't even push. I would stop mid hill, in the street and just sit.

So - onto my research: If one area of your body is affected by your flare-ups, does that tend to be reoccurring? Is that a good thing or does it show progression of the disease? Will muscle strengthening help? Or will I, no matter how strong I am, be afflicted by weak legs? Onto to the NMSS site to find out!

MS Symptoms: Severe, Subtle, Annoying, Expensive. They Come in all Shapes and Sizes.

This may be too information fro some. I know. But the whole idea of this is that if anyone, newly diagnosed or soon-to-be, they can Google "MS Blog" and see different experiences of the disease. The more the better - good and bad. When I was first starting to go through my 2nd bout of MRIs I starting Googling and I came across such a mixture of personal stories. The negative ones scared me - but took me into the world I was soon to visit. The positive ones reminded me no matter what it was my decision how I reacted.

My decision has led me to openly discuss the anxiety and panic of the first flare up and learning how to take my medicine - but shows the transition back into myself: Loud, abrasive, blunt, yet funny and friendly. Without having a second major flare up I feel both lucky and as if I've dropped my guard - that one summer night this year I will fall asleep to heavy legs and wake up unable to walk. As I should. It will happen again. But for not - that is not the case. For now I have small, minor, annoying symptoms: my 3 stupid left fingers come and go with numbness... I have been constantly tired for 3 days now (though it has enabled me to watch almost a full season of The X Files - so it's not all bad)... and I think my bladder control may be weak. I'm not in the Depends aisle - but last week Friday I counted that I had gone to the bathroom 7 times before lunch with only one cup of coffee. This isn't new - but it's becoming more persistent and a pain in my side.

Of course 3 weeks ago I saw my doctors - both my physician and my neurologist. My physician said, "Don't forget to tell your neurologist about that," and I said, "Ok!" What did I do? Forgot. Not entirely my fault - he likes to be direct and fast and talks over me even when he asks me questions. Don't get me wrong - I feel very confident in his hands... but I can't say that I don't feel rushed. So I forgot to tell him that I have to "tinkle" a tiny bit every 20 minutes most of the time. I even know there's a medicine for it... so I should have called him back at least when I'd finally remembered. But here I am considering the options: Calling back, asked to come back in - spend another $25 on a co-pay - for another prescription - another co-pay - for something should end on it's own within a reasonable amount of time - hopefully.

I should spend the next day or so researching this and really call back - or at least utilize some home remedies... but let me tell you this there are many reasons to love my job and work 14 feet from the bathroom is right up near the top!