Wednesday, March 30, 2011

Looking on the Bright Side

Problem: Nerve Pain
Solution: Medication

Side effect: severe dry mouth
Positive side effect of side effect: drinking more water

Negative side effect of positive side effect of side effect: constantly going up and down stairs to bathroom
Positive spin on negative side effect of positive side effect of side effect: NEAT (non exercise activity thermogenesis)

Sometimes it takes a few steps...but you can always find a silver lining if you try hard enough!

Tuesday, March 29, 2011

Back Home!

View from a CO hike

Back home in the tundra, now in full trip recovery mode. Had a fantastic week, did quite a bit of hiking and walking. I can't get enough of the scenery out there. More pictures to come in a later post.I felt really energized out there. It doesn't help the energy to come back to nothing but cold, flat, and white.  I'm pretty exhausted now, so I'm going to try to save up the few spoons I have to make it through the things I need to get done this week.

Friday, March 18, 2011

Being an Empowered Patient

I've been planning for a while to write a short review of a book I recently read, The Empowered Patient, by Elizabeth Cohen. To be completely honest, I didn't read this from cover to cover. This is actually something that is very difficult for me to do. It's one of my few obsessive compulsive tendencies: it pains me to not read books, magazines, even blogs, in their entirety. Cover to cover. But I've come to realize that there is just too much on my reading plate these days. Novels and much nonfiction and certain blogs I will continue to read every last word. But in magazines and certain nonfiction, I just have to browse and skim and take what is truly interesting or relevant to me and let the rest go. It still pains me a bit, but it's necessary if I want the time to read things I truly love, which I do.

So, back to the book. I read several chapters in their entirety and skimmed others. The book didn't necessarily tell me anything I didn't already know, but it was a very helpful reminder in many ways. Additionally, Cohen offered some interesting stories and examples and provided some very useful tips. The main "reminder" Cohen gave me was how to (and why to) be assertive. In many situations, being assertive is very difficult for me. When it comes to my health, I really struggle. I'm not a big fan of doctors, and never really had a positive doctor experience before finding my MS specialist neurologist. He's the first doctor I feel really listens to me, cares about me, remembers important information about me and more. Working with him has been a great experience. I feel comfortable and relaxed with him and I usually have no problem with being  assertive.

General health and other non-MS issues? Not so much. I generally avoid the doctor like the plague. I've never found a general doc I like or that I feel would ultimately benefit my health to see regularly. And with the docs I have seen, I feel anything but empowered and assertive. Cohen offered some specific tips and suggestions for how to get what you need and be assertive with doctors. Her website even offers some worksheets to bring with you to appointments. I'm not sure if I'll use these, but I definitely plan to use some written notes before, during and after my next appointment.

I was inspired to write this post today because of a podcast I listened to earlier today that also inspired me to get more proactive, assertive and empowered about my health. I'm a big fan of Jillian Michaels of Biggest Loser fame and I have been listening to her podcast in the car lately. In a recent episode, she was joined by Dr. Van Herle (the endocrinologist she worked with on Losing It) and something about the knowledge and passion and all the major issues they were discussing just inspired me to get my butt to the doctor! My neuro nags me every visit about finding a primary care physician, and it's been on my to-do list (the place tasks go to die, usually) for ages. Now's the time. Next week, I'm going to make appointments with an internist, a gynecologist, a dentist, and an optometrist! It's time to think big picture with my health. Managing MS is only one piece of the puzzle. My MS has actually made me more grateful for my body than I've ever been. I want and need to take care of it. It's a monumental task, but I'm feeling up for it!

I'm off for a week in Colorado to visit some family. The breathtaking scenery out there is always a huge inspiration as well. I can't wait to get out hiking in the mountains and really put this body to use!

Garden of the Gods  ~ Colorado Springs, CO

Sunday, March 13, 2011

MS =

It's been over a month since I've posted, oopsie! I have been working on a few different posts, but they're still in the draft stage, as I have a lot to say and want to say it well. Hopefully, I'll get them done soon. In my defense, it's been an abnormally busy stretch for me.

Speaking of being busy, MS Awareness week flew right past me. Not that I usually do anything to commemorate the week, but I thought I might at least put up a Facebook status or something this year. I want to get more involved in MS activism, and I know that awareness is important. After all, I didn't really know the first thing about the disease until I was diagnosed myself.

My schedule for this last week or so really highlights for me what MS is in my life. My pre-MS self and probably most of my peers would look at my schedule for this past week and laugh at how easy, relaxing and relatively stress free the week would be. To me, however, this week was utterly exhausting and I feel like it was a monumental achievement to make it through to the end. In order to make it through, I had to carefully adjust my medication regimens and do my best to get as much sleep as I could, while avoiding many activities I would normally do in an average day. I think that to an unknown outsider, I would have successfully passed for a healthy young professional, which I suppose was my goal. Behind the scenes, though, I was doing a careful MS-choreographed dance.

I'm not going to answer the question posed by my subject line, a reference to the current MS Society campaign. That would require a less fuzzy brain. So, this is not my "official" answer, but for me one thing that MS equals is a choreographer. It determines the dance, but I'm still the dancer. And you better believe I'm going to stretch to the limits of creativity and artistry within the confines my choreographer sets!

(OK, actually that's not too bad. I kind of like it. Good work, fuzzy brain!)