Running to defeat MS (symptoms)

The ER is my favorite place! LOL Went through my history with the ER nurse, who was a little distracted and jumpy. It was hard to summarize things for her. I thought I might be having a bit of 'roid rage ', alas, Kris said she was being a bit upity as well. Thanks hon, but if I had had some roid rage that would have been cool too! I could be a little more pushy during my hospital visits to make sure I'm getting all the care and assistance I need, I tend to be a little passive. So, I got into the room and out of the general chaos that was the waiting room, my headache was only a 3-4 standing and 1-2 sitting. But, it was an 8 during breakfast and a 6 during the infusion. I was seeking long-term relief. The Dr. came in and described the routine. Since my headaches were not 9-10's and they were not continual since Firday; I was not a severe case. I had a spinal headache from the Lumbar Puncture. Which can be serious. So, IV , saline drip followed by an anti-nausea medicatio...

After the lumbar puncture it was a long ride down to the Cape. I had a headache during much of the trip but didn't think much of it, especially since I've had migraines for 15 years. Unfortunately I had more headaches Sat. and Sun. but tried to take Advil to keep them at bay. On Monday after driving back up to Milford Hospital with another headache I sat down for the infusion. This wasn't bad, having an IV inserted was unpleasant but ranked low on the scale compared to recent tests. I developed a yucky metallic taste in my mouth but hey, that's nothing, right? My headache continued until I was lying down flat and subsided pretty quickly once I was on my back. Tuesday we went out for breakfast with Scott, Chrystal and Finley I felt pretty good going in the morning but developed a fierce headache right before breakfast. I wolfed it down, took the Prilosec (which I guess protects your stomach from the steroids) and drove into the Infusion Suite. Lying down my headache got ...

The neuro office advised I would be having another EMG, August 7th. This was the cold war era torture test I blog'd earlier. Fun. I called to preregister for this and the operator found my file and started reading off the tests I was in for. "EEvalskj at 1 EEasdkljasdf at 2 EMwela at 3" I'm sure they were something more reasonable but that's how it sounded to me. So, great after vacation I can look forward to coming back and having more torture tests! For all I know these could be simple, but I will find out soon enough, and won't think about it for another week at least.

The mixture of drugs, reduction in stress and my ability to meditate helped make this an easy operation. The radiologist was a tall guy who popped into the room after the nurses and techs did all the prep work. He jabbed me with novacaine, let it sink in, jabbed further, etc. I made it through that fairly well so I was feeling quite optimistic. In my head I repeated the matra, 'cuddle', 'Tyler' and envisioned us curled up on the couch watching Cars the movie for hours. There was a single pluck on one of my spinal strings that sent a shock down my right foot, but I hardly felt any more after that. A few minutes later the CSF was collected. I got off the bed pretty quick and wondered briefly why this wasn't what we did first! Ugh, no use with train of thought. Sat in the recovery room for about twenty, got home and lied down in bed 3.5 hours. Got up and we're packing for the Cape now. Onward to the next steps.

Hope the drugs work, hope they get some fluid from my spine, hope my radiologist is an expert. Wish me luck.

Instead of Friday, as I had previously planned, my treatment will start Monday with steroid IV for five straight days. The Dr. said I could become ornery and I'm relishing that possibility - so lookout! But Kris has drugs to calm me down and is in charge of keeping me stable :). This unfortunately coincides with our long-planned trip to Cape Cod Vacation, which has become a harbinger of bad times for my family... We'll have to plan many more trips so it that it doesn't feel this way for much longer! I'll be trying to put together a plan to minimize travel and maximize vacation time. If the treatment is each day at noon, which I'm pretty sure Monday is at noon. It might look something like this: Mon - Drive up to Milford, infuse the roids, stay overnight in Milford Tue - Infuse the roids, rest, drive back to the Cape Wed - Drive to Milford, infuse the roids, stay overnight in Milford Thu - Infuse the roids, rest, drive back to the Cape Fri - Drive to Milford, infuse ...

This morning I had the first attempt to collect cerebrospinal fluid (CSF). I was pretty high anxiety for a number of reasons. I had consciously decided not to research much into this as I'm sure everyone who had a bad experience would post something, and the majority, who didn't, wouldn't say anything. Unfortunately I saw the picture on wikipedia in the Lumbar Puncture page - i guess that didn't help, but it wasn't even all that bad... Sometimes you are your own worst enemy. Needless to say, I was stressed going in. I politely declined my Dr's request that a student perform the operation, that was an easy choice. So we got started I studiously examined the floor and the sink while they fiddled with instruments and instructed me to lie on my side. The novacain injection was unpleasant, a prick here or there and the usual pain I have with needles (ie. they say it only pricks, but for me it pricks and keeps it up). A few minutes later we are ready, I'm trying t...