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.

May

May is almost over and I've just recently accepted the fact that it is, in fact, Spring.

I had a great wedding anniversary on the 5th and a wonderful Mothers'Day!

I've also begun slowly to add some more computer and crafting activities back into my repertoire since my hand has considerably improved with therapy.

We participated in the MS Walk 2009 and MS Marketplace, in particular, which was a tent where three other Chapter members and we sold our handcrafted items. We had a fun day; beautiful weather, sold a number of items and donated 10% back to the Chapter.

It was a very long day because we had to be there to set up before 6:30 AM. We were done by about 2:30 and home by 4PM, having come back over the Brooklyn Bridge under our own power.

Since we didn't pack anything extra and really hadn't much time to spend on photography, the only photos we have are cell phone pictures but here they are:



I have written here about my shop on Etsy and about crafting nights at least once.

Another aspect of Etsy is the grouping together of members into Teams for the purpose of mutual support and promotion.

I recently joined the NewNewYork Team which ia composed of Etsy members who live and or work in New York City. I'm just beginning to find my way around the workings of the group and hope that I'll be able to be a truly active member by Fall. You'll likely be reading more about this as time goes on.

Sidelined

I haven't posted or done much crafting at all for most of two months because I developed tendonitis and synovitis in my right hand and arm. I've been going to Occupational Therapy twice a week.

Even though I'm left handed, most tasks, computer and otherwise, actually take both hands. So I've been limiting myself to those things that are absolutely necessary, using speech recognition on the computer where I can, and spacing tasks out, in order to rest my hand and arm and give it a chance to heal. I felt fairly virtuous about it for the first week or so, but now I'm feeling fairly frustrated and ready to get back into action.

At this point, I'm adding a few things at a time back into my repertoire and trying to find the easiest, least stressful way to do it. At least my Feldenkrais® training has given me tools to do that.

I do need to get a few more items ready for sale because we're participating in a new aspect of the MS Walk, staffing a Members' Business Table where we'll display and sell our crafts.

What's in my Etsy shop?

As I mentioned in my last post, I've become enamored of needle felting and am in the process of adding new pieces to my etsy shop.

I've also added the two books that David and I published which combine his photography and my writing, as well as framed prints of David's photos.

Here are some of the items that currently appear in my shop:

Craft Night at EtsyLabs-2/9/09

This was the pre-Valentine Craft Night and we worked on needle-felted hearts, among other things.

This was perfect synchronicity for me because I'd recently developed an interest in needle-felting and had purchased a small kit. I'd seen some felted items that attracted me and was interested in three dimensional objects in particular.

A couple of weeks ago, I completed a needle felted heart on a base of felt. It was three dimensional, but rather flat. I went to Craft Night in search of answers to some of my questions. I got the answers I was looking for and, as usual, had a wonderful time!

The evening was very well attended; pretty much a packed house for part of the evening..... The teacher for the evening, Nguyen-Le who owns the knitknit shop on Etsy.com was low key but very helpful and supportive.

I found out how to make my pieces rounder, received inspiration and had fun; what a great Valentine!

Thanks Nguyen! Thanks Etsy!

Below are my earlier endeavor, craft night products and some items I made later, all transformed into wearable or use-able form and now in my etsy shop (www.felden.etsy.com):