Sunday, August 24, 2008
Monsters and Faith
Sitting in in my comfy recliner, IV pole at my side watching the steroids drip in. Was finally able to start dozing about 4:30 this morning, and dozing is all it was. Gave up at 7:00 and figured I may as well take my meds and start the infusion. I also took a Prilosec this morning a few hours ago. I'm hoping that if I keep on the course of Prilosec through the infusions and for a week afterwards the heartburn won't be as bad. No muscle spasticity at all yesterday on Day 2 of the Neurontin. Today I move up to the max dose of 300mg three times a day. Of course, the no spasticity yesterday could just have been a coincidence, but I'm hoping it has EVERYTHING to do with the Neurontin and nothing to do with coincidence! Muscle spascity is just so incredibly painful. I can't even begin to describe it. Being awake all night left my mind plenty of time to race. Night time can be such a scary time. All the monsters are out prowling and the one's in your mind don't bother to whisper with everyone else asleep. They pipe up in full conversational volume. After all, it's so quiet there's no need to shout. They taunted me with all the "What if" questions all night. "What if this doesn't stop the Optic Neuritis, What if there is permanent vision damage, What if the MS is not going to stop and is on a steady course, What if you can't go back to work, What if, What if, WHAT IF?!?!? The answer is I don't know. I've already lost 100% of my hearing so the loss of any vision is very scary, but strangely enough I really don't worry about the vision. I KNOW God wouldn't allow the loss of both my hearing and my vision. As for the rest, He will allow whatever he decides. It's my job to remain faithful and do my part with treatments and trying to do what is in my power to do. Which frankly, right now, doesn't seem like a heck of alot. Hence sitting here in my comfy recliner with yet another IV in watching the steroids drip in. I hope this is my last round of infusions for a very long time. I'll know more about my options when I get down to UCLA. That scares me the most I think. UCLA. It was Dr. Geisser that diagnosed me and my fear is she will tell me the CRABS are no longer working for me and it's time for the next level of treatment. It's not the treatments that bring the fearful thoughts. Of course I don't WANT to have to step treatment up, but what scares me is what if the MS is starting a progressive course. If it is, then this summer indicates it's a pretty steady one. As along as I can remain mobile with my mind, I can deal with everything else. Because of my faith, my husband and the incredibly supportive circle of extended family and friends. Trying to keep everything in some kind of perspective isn't easy. Especially when the monsters come to chat, but I know that if I don't keep my faith and my perspective then MS has already won. I simply refuse to allow that to happen. One day they WILL know WHY MS develops. When they know the WHY then they will know the HOW to prevent/stop it. That break through may not come for another 20 years, or it could be announced next week. (Personally I'm hoping for next week, but not betting the bank on it). When the announcement comes I'd like to have enough mobility to dance a "jig" and enough mind left to understand the breakthrough!