$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!

Shots.

So here it is... if you do your shot on an angle or are lucky enough hit one of the tiny little veins that run in your thigh... it will hurt. and it will bleed. quite a bit.

Also if you give yourself a shot hungover you will most likely do your shot on angle and it will hurt. and it will bleed. quite a bit.

:)

Follow - Ups are for the birds

So without sounding too pessimistic (ha!)... follow ups for MS are ridiculous. Unless you are currently having a flare up (thankfully I am not) your doctor will ask your current symptoms - and if nothing is going on he will say "Well there's no need for more MRIs now, I'll see you again in 6 months" - and that'll cost you $78 (with insurance).

Ok - so optimistically - I have no major symptoms and there is only need for MRIs when things are a-changing. I am in a good place not physically and mentally. But still... I can keep a log of my symptoms for $3.99 (cost of log) and call you when something gets crazy.

19 days 'til the walk and Post-Walk party! Score!

April 2nd - One Day Away from 8 months diagnosed.

And exactly one month until the MS Walk in Milwauke, join or donate today! I currently have 22 friends/family walking with me - and that support is amazing. Taking a Sunday to walk around the lake with me - ridiculous. I have raised over $450 and the team itself has raised over $600! I feel loved. I hope in some way I can show each person how significant their efforts are to me. Thank you.

Wednesday night I took my shot a bit early so I could go pick up the dogs (dogsitting for the weekend). I decided to take the shot a bit higher than normal (normal = where the nurse said, despite what the directions said) and mush to my surprise I didn't feel a g*damn thing. This is exactly how it went around the first time, with the nurse - but it's never been that way since. Not that it's excruciatingly painful - but sometmes it is pretty uncomfortable. This week was a piece of cake! 7 months into Avonex and I'm doing great.

I do have the consistent 2 numb tips of fingers on my left hand - mainly in the morning. But it doesn't even affect my typing. Though the flu-like effects of Avonex still come - and typically dwindle off but stick around for about 16 hours... I have been at 98% performance. A bit tired - but that could just be my typical self.

New Flare Up? How can you tell?

• First things first: I was supposed to go to the doctor at the beginning of the year. It's now March 11th.
• Second things second: My left leg aches, I woke up in the middle of the night the other day in a weird stage of feeling numb all over but not. Impossible to describe.
• Third things, th- well you get the idea: I think I am stressing myself into a small relapse.

Ok, I am planning to make doctor appts for April. I may that today in fact. I just really don't have the time nor patience for taking off work and going to doctors, probably will have to schedule a new MRI... and that's an easy $500 right there.

FM'MS'L.

;)

Question to ask doctor - do not forget!

What is it that I am hitting when I take my shoot that makes my muscle twitch? A tendon? Nerves? Is it ok to do?

Last night's shot was taken a bit later than usual so I followed it up with two Tylenol PM so I didn't wake up earlier than I had to. As I shoved the lil guy in, the muscle tremored inside my leg and it almost made me loosen my grip on the syringe. This has happened once before. Very odd sensation for sure!

Growing Pains

Ok, what's the deal? Not sure if it's MS related or what - but I've been in a bit of pain lately. Sharp pains in my neck here and there, my left knee cap is all tight again - it almost feels like... the cold part of Bengay mixed with the dullest discomfort. Shoulders are tight - but that's normal for me. There was sometime when my tight thigh, in the middle was throbbing... but that went away quickly. Then the weird sight things... every once in awhile, so a split second I feel dizzy and have to blink a few times just to re-adjust. But I don't know hat that means. I just might be tired... oh yes, tired! I'm tired ALL THE TIME. I feel like you just talk yourself into fitting symptoms and I'm hoping that's what I'm doing.

Mind over matter!

I do have to go to my Neurologist soon - I should have went in January but I think that means another MRI and that's a $500 deductible and I just finished paying off last years MRIs and Chiropractor visits (when I thought... I mean hoped it wasn't MS - that was a waste, huh?). It's all follow up and I do need my liver tested... I guess the story goes that my meds, Avonex, can affect my liver - as can the aspirin I take to cover the side effects, AS can the drinks I have to accompany the aspirin that I use to cover my meds side effects. Woo whee. If I even have a liver I'll be excited! I'll call my doctor soon... after taxes perhaps? That's a whole other story... sigh*

6 Months Today!

So today with a glass of wine and my shot... of course, its Wednesday! I "celebrate" my 6 month anniversary with the official diagnoses of MS. But always with life you take the good and the bad and figure out the way to make the good outweigh the rest, even it its with a little fudging of the numbers.

Where am I? I have had slight symptoms return... every once in awhile I have a tingle here or there but no "flare ups" as they call them. Besides the physical, I think I may be feeling more of the fatigue than anything else and it's kind of hard to keep on task, but that's not all that bad.

Lately I'm almost feeling guilty for spreading the news and participating and advertising the local MS walk in my area in May. It is something directly affecting me, but that's not to say there aren't a million things more important to worry about for the world or anyone else personally. I think of a ton of them everyday. Each of those days the world is disappointing, scary, sad... so I look at it like this: there are still hundreds of thousands of people (officially diagnosed) with MS. So even if my small contribution to caring is somewhat selfish - its still a contribution nonetheless.

In my head I feel 100% fine and my biggest fear is returning to where I was during my most disabled moments. Fearing that I couldn't cross the street faster than the car coming towards me - despite the fact its a block away, unable to stand during a concert - wavering against the chair I should have just sat in and left the tears for something more deserving, unable to feel my leg or my chest - like Novocaine shot directly into my nervous system... I've always hated the dentist. I've got it better than many and I treasure every day, wherever the gift has come from.

One thing that has helped is the supportive words from close and distant friends. Sharing my situation seems to be another selfish act, but kind words go a long way. For anyone that has taken a moment out to give me your thoughts - thank you. Your words do not come without returned emotions. And anytime you need me, I am there.

With all of life's trials and tribulations you take them as they come and since I am fine at the moment these worries are left for the birds! Take that! My worries are left for bills and busy days... headaches and commitments... life is life. I am living it... and with the inspiring words I've read today from a friend... "If it changes your life, let it. Nobody said life would be easy, they just promised it would be worth it," I bid you adieu.

m*

2010: new year, new decade, new ink!

2010, 7 days in and you aren't the worst thing to happen to me!

Last night I took my shot at 10pm with 3 Tylenol. Went to bed, woke up feeling just great! Which was a 180 to last week in which I took it at 2pm - planned some day drinking/socializing with a friend over my furlough - and no aspirin - I was going to be drinking - and I ended up feeling every little bit of the Avonex aftermath!

I also took my shot after getting my brand new baby. And I shared the experience with my best male friend, Joel. He's a huge Dave Matthews fan, and Two Step is one of my favorite songs of all time. Considering my new outlook on life - it's short and I'll be dead one day, it seemed most appropriate. And yes, I have a best friend of each sex and they are the most incredible people in my life.

...Celebrate we will life is short but sweet for certain...

Two Step, DMB

Say, my love, I came to you with best intentions
You laid down and gave to me just what I'm seeking

Love, you drive me to distraction

Hey my love do you believe that we might last a thousand years

Or more if not for this,

Our flesh and blood

It ties you and me right up

Tie me down

Celebrate we will

Because life is short but sweet for certain

We're climbing two by two

To be sure these days continue

These things we cannot change

Hey, my love, you came to me like wine comes to this mouth

Grown tired of water all the time

You quench my heart and you quench my mind

Celebrate we will

Because life is short but

Sweet for certain

We're climbing two by two

To be sure these days continue

The things we cannot

Celebrate, you and me, climbing two by two, to be sure

These days continue, things we cannot change

Oh, my love I came to you

With best intentions

You laid down and gave to me

Just what I'm seeking

Celebrate we will

Because life is short

But sweet for certain

We're climbing two by two

To be sure these days continue

Things we cannot change...

Things we cannot change

twenty10.

Ah, 2010. Hello you mysterious year, you. What do you have in store for me? Only time will tell.

Oddly enough, I could be typing this at 3:12pm on this Sunday afternoon and I could be dead by tomorrow morning. But with all "optimism" aside - I could make it and things could be worse!

Or better. Resolutions. Have you made one? or Three? I have had a few ideas on my mind for the past few months and am hoping that the new year will remind me of these and that I will try to consciously to myself right.

The only one that I can guarantee I will hold on to the longest is that fact that I will not let my new disease let me down. In the past 3 weeks I have mentally beaten my medicine - though it still physically kicks my ass once a week. I have been feeling slightly weak in the thighs... I haven't tossed a single pair of heels, or lost one ounce of confidence to embarrassment. And I refuse to because laughing if off will make me feel way better.

There are other things that may beat me or that I will not be able to change... my diet, my finances, my love life... but those are lifelong battles themselves for everyone. And even in the depths of lows I'll still appreciate them as part of my life, that I'm living. I hope I'm here tomorrow to keep talking about it.