Sunday, March 22, 2009

I'm watching the NCAA Tournament, and I'm watching a feature on Siena's Kenny Hansbrouck and his dad, who has MS. I was glad when they won their first round game, and I am going to be cheering like crazy for them in round 2.
Even though I'm doing a lot better than many people with MS, I still have to deal with the ugliness of this disease. Today's word is constipation. I warned you folks, this disease ain't pretty. It presents a cruel dilemma: on the one hand, drinking plenty of fluids can help you prevent dealing with constipation. But MS also likes to play with your bladder, too, which can make you hesistant to keep pouring liquids into this quirky body part. So which is better...wetting your pants or having cramps, noises, and smells?

So now the emergency kits has a new addition. I've got the spare pants for the bladder issues, and the laxatives for the bowel. Since it's a weekend, I read up on the MS Society site for ideas on which ones to try.

I know, I know - this is not a pleasant topic. But when you're talking about MS, not many topics are.

Sunday, March 08, 2009

Having MS can make routine tests turn into a double-edged sword. I had a colonoscopy last week, and while one of the doctors was explaining the procedure to me, he mentioned that it could lead to a flare-up of my symptoms. I didn't think much about it at the time, but I did remember those words a few days later as I was dealing with some major fatigue. I had wondered why my right leg had been feeling bad, and I wondered why I was so tired even though I had a good night's sleep and a morning nap. When I remembered that doctor's words, I understood.

The colonoscopy is one of those tests you have to prep for, too. I was on a liquid diet the day before the test and had to chug a solution the night before and morning of so that I would practically live in the bathroom. But that part of the prep was a piece of cake. The worst part? No blood thinners for three days before the test, which meant no ibuprofen on one of my shot days. I had to deal with the side effects of the Rebif that night, which was not pleasant.

Saturday, February 28, 2009

Had a good checkup with the neurologist this week. He wants to see me every 3 months to check on my progress, see if the Rebif is working for me, and to get my blood checked to make sure these meds aren't killing my liver. He called back the next night to tell me that this blood test came back just fine. They all have.

I still laugh when I think about my mother's reaction to an article she read in the paper about Avonex being bad for the liver (back when I was taking Avonex). I just rolled my eyes and said that wasn't news...that's why I was having checkups every three months, because ALL of the drugs can be bad for the liver and needed to be monitored.

Sure, the disease-modifying drugs can be bad for the liver...but MS can be so much worse for a lot more than the liver. It's a matter of perspective.

Thursday, February 26, 2009

The weird thing about having MS? I feel a HUGE sense of relief when I'm not feeling well and know it's because of something other than MS. Like this summer when I broke my toe - I didn't break it because of MS balance issues, I just broke it because of normal clumsiness.

I felt like crap earlier today. I was tired, my brain was scattered, and I wasn't in the mood to get much of anything done. I started to worry for a little while...until I noticed how much chocolate I was snarfing down. Oh cool - it's PMS! I was actually psyched to realize I had PMS, and it was a lot easier to be nice to myself.

Saturday, February 21, 2009

It's been awhile since the second opinion, and things have been fairly routine. Haven't had any major issues, but have had to deal with some of those annoyances that come along with MS. But I've learned to adapt. For example, I've learned that I better have a spare pair of pants and underwear at work, in case those unpleasant bladder problems led to an accident. It's only happened once at work, but at least I could just grab the spare clothes, change quickly in the bathroom, and get back to my day.

Winter brings a double-edged sword. The cold weather is much easier for my system to handle than the warm, but it is challenging to layer up to go outside and then walk into a heated room with all those layers still on my body. The worst thing is that winter brings colds and flu, and my body does not handle fevers well.

I am relieved, though. After wrestling with whether or not I was on the proper treatment, I've had two doctors agreeing that I should be staying the course. Given how I have felt over a period of time, I'm in agreement.