Friday, September 4, 2009

Good bedside manner

I wasn't feeling particularly interesting or witty yesterday so I didn't sit down to write my blog. I didn't want to put my readers to sleep. That would be relevant if I actually had readers. In time. Baby steps.

When I was diagnosed I knew that finding a good, understanding neurologist was key. Of course my husband was all over it. Because that's what men do (they research, find answers and fix things) and because he had worked at the U of R and had contacts. I'm from Rochester, NY by the way.

As a result...I made an appointment with the head of the MS Center at Strong Hospital. An extremely intelligent, kind man who was willing to put up with my many questions and my need to explore alternative options. He wasn't necessarily a proponent of the alternative options, but told me if it made me feel better and it wasn't harmful then do what I need to do. I always kept him in the loop about what herbs I was taking or if I'd gone to acupuncture. He did raise his eyebrows at me a couple of times, but kept his comments to himself. I can only imagine what he was thinking when I'd walk into his office with 10 bottles of Chinese herbs.

The bonus is that he has a nurse practioner working with him who specializes in MS. She is truly amazing!!! She always listens. Always has good input. And always makes me feel like everything is okay.

I consider myself very lucky to have found these individuals. Especially since I've heard some stories about doctor/patient relationships that are so not good.

My point here (and there always is one eventually) is...make sure you find a neurologist that makes you feel comfortable, answers you questions and provides good input. If you don't like your doctor and they have the bedside manner of an armadillo...get a new doctor!!! This is your life. Take charge.

I'm going to take the long weekend off and enjoy the nice weather. Until next time...

Wednesday, September 2, 2009

Just the Facts

I've stepped off my soapbox today to finally get on with my story.

I was diagnosed with MS 6 years ago. If you read my bio, you know that the year I turned 40 was a rather dramatic year for a lot of different reasons. I self-diagnosed myself with MS in the spring and was finally able to get a doctor to test me, confirm that I did indeed to get an MRI and the final diagnosis...You have MS later that fall. Really? Seriously? Isn't that what I was hinting at all along?

I had optic neuritis in my 20's. That alone should set off all kinds of bells, and whistles. But no. In the spring I noticed that I kept having weird spasms in my right leg and if I went for a walk, after a couple of blocks my leg started to drag. And I couldn't run anymore. I looked like a pirate with a wooden leg hobbling down the sidewalk. I thought I just needed new sneakers. Needless to say the sneakers didn't help. But everyone kept telling me...'Oh no, you couldn't possibly have MS.' Did I mention I'm of Eastern European descent, and live in Upstate NY where the MS rate is extremely high? I'm guessing most of you out there would have come to the same conclusion as I did.

But wait, there's more...I love to ride my bike and decided to do a 40 mile ride to earn money for Diabetes. At one of the rest stops my right leg ceased to exist. Like it was totally asleep. Finally I got the feeling back in my leg and finished the ride. Called my doctor. I was told...'Come in when it happens again.' I don't even quite know what to say about that response?!?!

So...still no appointment. Still no diagnosis. So I just plugged along and decided ironically to do a century ride for MS. 100 miles, just me, my bike, a really bad map and hoping that I wouldn't get lost and end up in Canada. I did get lost at least a couple of times. Brought my bike into a convenience store so I could use the bathroom (more about the bladder in another post). Had some issues with my leg which I ignored. I just ate a banana and off I went. And actually finished the ride. Hot. Sweaty. Limping. But I finished. And I have to say that it was one of the proudest moments in my life. I figured if I could ride 100 miles on my bike, I could do anything.

So once again I call my doctor. Actually my PA. She told me to come in. She actually did some tests to see what was up. She found that... I'm hyper-reflexive. (I like to think of myself as some kind of super hero.) I have clonis. (sp?) My right side is significantly weaker than my left. And I really needed to get an MRI.

If you've never had an MRI. I really don't recommend it. It's at least an hour spent in a tube with jackhammers thudding, whirring and pounding around your head, while you're freezing to death in one of those skimpy, ever so stylish blue hospital gowns. I never know whether to tie it in the front or back? And there's the injection to show contrast. I'm sure many of you have undergone this procedure and found it as entertaining as I did. NOT! They really should provide cocktails or a snack. It would make the experience that much nicer.

Twenty minutes after I got home from the MRI experience I received a call from my doctor. 'Unfortunately you have MS. ' 'You need to make an appointment with a neurologist.' Call over. Really?

Tomorrow...finding a neurologist with a good bedside manner.

Tuesday, September 1, 2009

The beginning of my story

I'm definitely going to have to break this story into separate parts. Otherwise my post will be too long, people will fall asleep, I'll lose my readers.

Before I begin, I have to say that I have the highest admiration for those who work in the fields of traditional and alternative medicine. I work with an amazing team of people who help keep me fit, sane and healthy. With that was challenging to say the least to finally get diagnosed with MS. Seriously. It shouldn't be that difficult. But it is. And we all know that.

This is where I get on a soapbox about being an advocate for your own health. Being an advocate for your own health isn't an option. It's mandatory! Just because you're told something by a doctor, doesn't mean that you can't question what you've been told. Doctors have a lot of knowledge, but let's face it they don't know everything. How could they? And that's okay. But that's where you have to step in.

Explore all the options out there when you get diagnosed. When I said I have a team I wasn't kidding. Here's a list of the people I hang out with on a regular basis as I try to manage my MS...neurologist, GP, therapist acupuncturist, chiropractor, physical therapist, and a personal trainer. No one told me to see all these people. I made that decision on my own based on the research I've done and my gut instinct that tells me there has to be different ways of dealing with MS.

I'm stepping off my soapbox for now. Until next time...

Monday, August 31, 2009

Just Do It

I decided after much procrastination and making more excuses than I thought possible to start this blog. My blog is going to be about the good, the bad, the funny, the not so funny, embarassing, silly, life altering moments of my life with MS.

I know that essentially everyone is blogging about something. And of course that was one of my many excuses not to do this. Along with...Who's going to read my blog? Am I a good enough writer? Will people think I'm interesting? Witty. Intelligent? Will the other kids like me? And then I figured I'll never know the answer to those probing questions until I actually got off my butt and started writing.

I think a blog about having MS needs to be out there. It's not just for people with MS. It's also for the people in our lives as well as individuals with other types of autoimmune diseases.

For lack of a better way of saying it...I'm going to keep it real. I'm going to provide full disclosure about what's going on in my life. Not pull any punches. Be brutally honest. Not hide a single thing.

I want this to be a space where people can come and understand that while I have MS, it doesn't define me and it doesn't have to define them.

While I'm not a doctor, nor do I play one on tv, I'm going to provide information and advice that I've found helpful. Serve as a cheerleader (without pom-poms and the short skirt) about dealing with life with MS. And hope to meet a lot of other people who share this world with me.

Tomorrw...the beginning of my story.