praise the Lord and pass (up) the prednisone

It is the 18th of the month. I am NOT taking prednisone today.

Let the clouds part and the angels sing! I have been given a permanent reprieve from pulse steroids. Never again shall I taste their bitter taste and swell up with their terrible bloating.

(Apparently you can’t take them for more than two or three years, or else you risk getting brittle bones and/or losing your peripheral vision or some such thing.  FINE BY ME! The past three years have been more than enough.)

More news soon on whether or not the latest MRIs show any improvement!

a slow start to the summer

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Ladies and Gentlemen! I am thrilled to announce that it is officially summer for Lori.

I’m looking forward to summer this year. I have made a momentous decision to cut back my work hours to three days per week instead of five, a change which has just gone into effect this week. Theoretically, this will give me more time to take care of my health, more time to fit in medical appointments, and – hopefully – a lot less stress. It’s kind of crazy to think about cutting back on our income, because we’ve gotten used to a certain amount coming in per month, but we are nothing if not thrifty, so now we’ll just have to rise to the occasion. We’ve got two good jobs and nothing to complain about! I know when to count my blessings.

I must say, though, that the thrill of having the time off work has not yet kicked in. I blame prednisone, the steroid monster of doom. Continue reading “a slow start to the summer”

what is MS, anyway?

world ms day logoIt’s World MS Day, a day that people around the globe share their experiences with MS to raise awareness of the disease and to drive research for treatments or a cure. There’s a great article here if you’d like to learn more about World MS Day, or you can go here to read all kinds of technical stuff about MS in general.

I have Multiple Sclerosis, MS for short.

What does that mean? Well, sclerosis means scars, so literally it means “multiple scars.” But where are those scars? In my brain and on my spinal cord.

MS means that the myelin sheath has been destroyed in some parts of my nervous system. Picture an electrical cord or a stereo wire: there are wires inside of a plastic sheath, right? In your body, that sheath is made of a fatty substance called myelin. Its presence helps the nerves to transmit their electrical impulses correctly. When myelin gets damaged, scars form on your brain or spinal cord and the messages traveling down those specific nerves get thrown out of whack.

Scientists believe that MS is an autoimmune disease, that tiny Pac-Man guys produced by my own body are nibbling at my spinal cord and brain. (Okay, that’s not how demyelination is technically described, but you get the picture.) The thing is, the scientists have no idea why this happens, so they can’t stop it or prevent it.

People don’t always understand that living with MS means something different for every single person. It all depends on which specific nerve is being attacked.

Let’s say someone told you that they had a computer virus. You might say, “Oh, yeah, bummer – I had a computer virus and I couldn’t print,” but they might respond, “Print? I can print! The computer virus I have makes my web browser crash whenever I download something.” Someone else might say, “Man, when I got a computer virus, I got the Blue Screen of Death.” Obviously, it all depends on which part of the computer system gets attacked by the virus.

That’s how MS is. If the nerves to your eyes are being attacked, you are going to have very different symptoms than someone whose myelin is being destroyed on the nerves to their arms or legs or bladder. The human body has two kinds of nerves, too – sensory nerves, which affect what you feel, and motor nerves, which allow muscle movement – and depending on which type of nerve is being attacked, symptoms can be very different. In fact, no two people with MS are going to have the same course of the disease.

So what does MS mean for me?  Continue reading “what is MS, anyway?”