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.

;)