Sunday, April 15, 2012

Walk MS

So after the revelation in the previous post, I decided to participate in the National MS Society's Walk MS fundraiser. Which turned out to be about a month from when I was diagnosed. I figure it's a good way to meet some other people in the area with the disease, as well as get my butt moving. It's going to be really important that I exercise now, though I still can't imagine when the hell I'm going to find the time.

So I started a team: Pirate Robots   (yeah, I let Little Dude pick the name)

And I set up a challenge: If we raise $2000 then I will dye my hair this color for race day.

Right now we've got $803. We've got $1,197 to raise in the next 7 days. (Less if you consider that I'd be getting my hair done sometime on Saturday).

If you can, please donate. MS is an area of research where they are making tremendous strides, but there are still a lot of unanswered questions. I am lucky that there is an MS Center close to me for treatment. Others are not as lucky. Please help. Or if you are local, join the team and walk with us. If the weather is good, the kids will be in the wagon with us. And if you walk with us, I'll have some Pirate Robot headwear for you.

So there's my plea.


Tomorrow is my big appointment. I'm somewhat nervous, but mostly overwhelmed with all the information I've been reading.
And I've been knitting, so I'll have some crafting posts forthcoming.

All that it is

Hi. It's me again. I know I've been gone for about a month but I've been dealing with some medical issues. I've been pondering how to write about this, or whether or not to write about it. I've really been thinking about this blog and what I want it to be. I feel like I'm withholding so much of my writing because of my kids. Not in the 'they will one day read this way' because I'm no less strange in my daily life with them, but in a 'protecting my kids from the creeps of the world' kind of way. I'm struggling to find that balance. Plus I don't want to bore you with stories of my kids. I do that to people enough. So what do I want this to be....I don't know, but I want it to be more. I've been listening to a lot of podcasts lately and thinking of this blog. Podcasting is so not a possibility for me at the moment, and I totally hate the sound of my voice. So I'm left with the blog, and that's not a bad thing. I just need to figure out how to fit it into my life more. Little Miss is more mobile and weaned and I nearly have a space of my own at home, so a think a renaissance of my lovely little blog is on the horizon.
That being said I wonder if anyone reads it anymore.

So let me tell you the tale of my medical adventures lately. Since the birth of Little Miss I'd been experiencing weird twinges in my upper back at random moments. It was usually when I would sit down to nurse her. Later I discovered it was linked to the motion of looking down, which you do when you nurse, so that makes sense. No big deal, I filed it away to mention at my next doctor's appointment. It happened so randomly that it didn't worry me. Then in January I noticed numbness in the tips of my two middle fingers on both hands. A little more unsettling as my hands are my livelihood. And then it began to spread...a tingly numbness. When I was in the doctor's office for Little Miss, I made an appointment for myself. (side note- we see a family doctor who treats the whole family) I saw the PA in mid February and she sent me off to a neurologist to test for carpal tunnel regarding my hands, and felt the back issue was muscle related. At this time the back twinges were happening more frequently.
So I have the nerve conduction test, which in simple terms means they shocked me and stabbed me with needles. It was not a pleasant visit, perhaps made worse by the fact that the doctor felt no need to really talk to me at all. I'm sorry, but if you are going to poke the crap out of me and zap me, a little small talk would be nice. Is it really to much to ask?
That test came back negative. No sign of carpel tunnel at all, which is why it probably hurt so damn much. The PA kind of was taking a very laid back approach to the whole situation and just suggested I wear wrist braces and go from there. And here is the turning point for me. I'd hate to think where this would lead if I had just left it with that. But, you see, the numbness/tingling started to show up in my feet as well. I told her this and pointed out that my mother has MS. She consulted with the doctor and set me up with a neurologist appointment.
Off to the neurologist I go. Mind you, all of this is going on in the busiest part of our season. I was swamped at work with several shows and drama disasters left and right. Right off the bat I love this doctor, and it's not just because she has this lovely Irish accent. She's my age and has a son who's age falls between my two children. One of our first discussions was about breastfeeding, and I knew she supported my goals and concerns in that area. I was sent for a slew of blood tests (10 vials!!!) and an MRI. Ah yes, the MRI. I'm somewhat claustrophobic; not horribly so, but enough that the thought of being put in a tube surrounded with loud banging didn't quite thrill me. I have a co-worker who somewhat tweaked and ended up not having his. His experience actually helped me when I was in there. I kept hearing his voice saying "don't open your eyes", but then I'm getting ahead of myself. One of the questions they ask you is if you've ever gotten any metal in your eye. Why yes. I work building stuff. We weld, grind metal, cut metal and do all sorts of things with metal. I've gotten it in my eye. This is a problem when a giant magnet is going to be whizzing around your head and could pull that metal through the wrong side of your brain. Therefore I needed an X-ray to be cleared for my MRI. I warned them of this in my pre-appointment phone call. They apparently didn't get the memo. So, I'm sent of to radiology. I get a few X-rays. I sit and wait. The doctor sees something and wants a few more. The doctor still sees something, but isn't sure what it is so he wants a CT scan. I have the scan and then wait some more. They clear me for my MRI, so by the end of the day I've had 4 or 5 X-rays, a CT scan, and an MRI. I half expected to glow in the dark.
Off to the MRI. Apparently the patient before me freaked out because I saw the nurse walking a tearful woman back to the changing room saying that it happened all the time. That bolstered me some into not freaking out myself. They at least provided headphones and tuned it to my chosen radio station. I found it amusing that my job and it's proximity to loud noisy tools perhaps was the best preparation. The banging was a minor annoyance. The laying still for an hour was harder. Oh, and don't leave your ticket for the parking garage in your pocket.
That was a Thursday. I had an appointment with the neuro the following Wednesday. On Friday she called me and asked to see me later that day. Needless to say I somewhat freaked. My stomach pretty much dropped out and I had to force myself to eat lunch. My mind raced through all the possible options that I had been pondering. I have to say those were the worst moments. The uncertainty...the horribleness of my imagination (there is a downside to an active imagination)...the dreaded anticipation were all worse for me then the actual answer.
And that answer? Well, I have Multiple Sclerosis. It wasn't the worst thing on my list, but it wasn't the best either. My Mom was diagnosed with it 20 years ago, so I am no stranger to it. I am more fortunate in that we have caught mine very early and in that research in this area has made great strides since then. When my Mom was diagnosed, there were no real treatment options. You went into a lottery for a chance to participate in drug trials. Now there are several options, not without their downsides mind you, and several more on their way. My doctors, I have two neuros now, are being very proactive. I found out on a Friday. That Monday I began receiving treatment for my current flare-up. And soon we'll decide on the next course of treatment.
An so begins a new journey in my life. I've been surprisingly pragmatic about it, much in the way I handled Little Dude's 'accident'. Getting upset or depressed about it won't change things. It's best just to deal with it as it comes. Don't get me wrong, I'm not 100% with the situation. There are moments where the whole thing seems very surreal. Sitting in the hospital with an IV and a bag of steroids going into me made things far to real. But what else can I do. I'm a mother of two amazing and energetic kids and a full time scenic artist. I don't have time to wallow in self pity. I don't plan to submit.