April 30th - Day one, Solumedrol Infusion

The medication and infusion supplies were delivered last night and just about noon today, a nurse from Visiting Nurse Service arrived for my first infusion.

He took my medical history, explained the services of the agency and the specifics of the infusion procedure, discussed my previous experiences with it. He then inserted the intravenous catheter which stays in place (if all goes well) for the five day duration of the infusion. He then instructed me in the procedures for mixing the medication with the glucose solution, setting up, connecting and disconnecting the medication from the tube (catheter) that remains in the vein. He remained for a couple of hours to monitor the progress of the infusion while he input data into the record.

He'll be back here tomorrow, but it's my understanding that the next few days I'll be on my own, unless I run into a problem and call for help.

So unless I misunderstand the plan, if I don't need further help, someone will be back to check in on Tuesday and to remove the catheter.

We planned to do the infusion slowly and started it quite slowly. Within the first half hour, though I was feeling and looking quite flushed and so we decided to dial the flow back a bit further. The whole thing took about three hours.

I'm already hungry, but I'm trying to be really careful to stay in my calorie range.

I'm thinking of dividing the meals into more smaller, more frequent mini meals for the next few days so that I don't get ambushed by the munchies.

Well, It Looks Like It's An Exacerbation, After All!

After having lots more ups and downs within the past several months, than is usual for me or than I like, I've discussed it with my neurologist and decided to go on a course of IV steroids.

Yesterday and today I've had a particularly hard time, with blurry and double vision; gait and balance problems as well as massive fatigue.

I'd been really trying to "ride it out" and had been minimizing how bad I'd been feeling because I was hoping to avoid taking steroids, because the side effects are pretty unpleasant for me; not the least of which is weight gain (..and I've been doing pretty well up to this point...), stomach upset, and also agitation and sleep problems.

Having decided, there was some arranging to do, so there'll be a bit of a delay in actually getting it going.

I'll be doing it at home, so the medication and supplies need to be ordered and delivered and a referral will be made for a visiting nurse to come to do the infusions. Naturally, the various insurances will be involved.

More Ups and Downs

The increased fatigue that I had been experiencing in late February and early March, improved for a while but then over the last couple of weeks, I've had another increase in symptoms, which were particularly intense over the past weekend, including Easter. I was again experiencing intense fatigue along with gait problems and some visual symptoms.

Last week, I found myself unable to go to Aquatics or to my Physical and Occupational Therapy Sessions and had trouble even getting out of bed.

I've been trying to do what I can until I can get back on track in terms of exercise, but I've been continuing to log my food and water intake and have been resting.

I was able to visit with family on Easter and to get to Holy Week and Easter Services at my parish, even though I wasn't too lively.

On a lighter note, when I got dressed for church on Holy Thursday, I found that the skirt that I planned to wear was quite large in the waist. This was the first time I'd really had a chance to notice a significant difference in my clothing.

By Monday, I felt a bit better and once again got to my programs.

Below is a photo of our Easter Eggs, some of our Easter Dinner and of the tulips on our table.