Saturday, August 23, 2008
Sitting on my recliner waiting for the home health nurse to come. Dreading the attempts to start the IV. Wish I could say the anticipation of treatment is the worst part. However, from personal experience I know that the anticipation is nothing compared to the effects of the treatment. Took my second dose of Neurontin this morning and will take another tonight. Starting tomorrow I take it 3 times a day. I should know within a few days if I see an improvement in the spasticity. For those who have never had the experience of muscle spasticity I'll explain. I'm sure you've had a Charlie Horse. You know, when your calf muscle locks up and no matter what you do you can't get rid of it and so you hobble around cursing. Now imagine having a Charlie horse of your entire leg, up to and including your hip. The spasms are so bad that your ankle turns inward to such a degree that it looks like you have a broken ankle while your toes spread out further than nature intended. You are in such pain all you can do is lie there and cry. Mine last approximately 40 minutes with no relief. They will let up for about 10-30 minutes then start all over agin. This goes on for hours. Welcome to MS spasicity. It's not limited to your legs either. It has hit my arms as well as my chest area. I will have what feels like a band that tightens around the left side of my chest. It often makes it feel like I can't take a deep breath. Hence, trying the Neurontin. Anything that makes the spasticity go away, or even ease up so it happens infrequently instead of almost daily is a Blessing. The old saying, "what doesn't kill you makes you stronger" comes to mind. I agree, but it also makes you tired. I admit I get tired of constantly fighting. Some days I don't know where I'll get the energy or strength to continue the fight. When that happens and I can't find any positive to focus on, I pray. Those are the days when I know I just can't do it anymore and God picks up the slack. Today is one of those days. I'm tired. I'm tired of fighting, tired of hurting with the spasticity, tired of exacerbation's, the numbness, the difficulty with balance and walking, tired of yet another challenge (optic neuritis), tired of putting one foot in front of the other to continue the MS journey. Things look bleak. More steroids, 3 physicians have now recommended the chemo route and if Dr. Geisser also recommends it then I'm chemo bound. My hair is already falling out in clumps from the amount of steroids I've had this summer. Finally had my hair cut really short last week. My stylist was shocked when he saw my hair. Wig time. With all the side effects why could just one be weight LOSS? THAT would make it almost worth going through! I've thought of saying forget it...NO MORE. Then rationality kicks in. What if I really said no more? Imagine..no more shots, no more steroids. Talk about exacerbation's! If the treatments and meds I'm on now are barely keeping the beast at bay, imagine the havoc that would be unleashed if there was nothing to try to protect me from the beast that is actually my own immune system turning against me. No thanks. The goal is to stay mobile as long as I can. So, I continue the journey in my personal battle against MS and in reality my own body. How awful when your own body is what is fighting you. One one hand, it explains why I'm never sick. I have an awesome immune system. Unfortunately, that same wonderful, strong immune system is wrecking havoc on my neurological system. Well the nurse is here......more later.