ONE YEAR LATER!!!!

Wow, I knew I was behind on my posting but a whole year!!?? AAAARGH!

Part of my neglect has had to do with the fact that I've had several health setbacks, first some repetitive stress injuries and then a slow starting, kind of long lasting flare up of my MS, so I haven't been doing too much on the creative side that didn't also have a practical purpose at home.

My priorities were placed in attempting to manage everyday life and responsibilities to family, friends and community while also trying to get better. I've actually made some progress but recently realized I needed a bit more help, so I'm doing a round of steroid treatment.

Here's a nutshell version of last year. I'll try to keep it in some sort of order, maybe reverse is best, since the medication decision is the most recent.

The previous post shows a photo of our table at last year's MS Walk. We did not participate at the Marketplace tables this year because I was too fatigued. I did, however, sign on as a "Virtual Walker" to raise funds and exceeded my fundraising goal, thanks to wonderful friends, relatives, neighbors and colleagues.

I've been going to Physical and Occupational Therapy and to an Aquatics program for people with MS and up until the flare-up, had been improving my endurance and my ability to do some of my crafting without pain. However, I still haven't had a sustained level of energy that would allow me to conceptualize and realize a complete project.

We were able to have all of our usual family celebrations of birthdays and holidays, though sometimes with a revised level of expectation of the work I required of myself to do that.

With the help of other family members we were able to assist an elder family member to deal with a medical emergency that then required a new living arrangement in an assisted living residence.

So, while the external crafting of art has been suspended for a time, the art of life has gone on...

The photos are some of the "practical art" that has come of the year.

May 4th- final infusion

...Sounds like a movie title...

Today was the final day of my Solumedrol infusions which brought my dose down to 250 mg. of Solumedrol.

From here on I'll taper the dose down using oral medication.

Thus far, I've felt very empowered by being able to check in for support at Spark People and to be able to log my food intake and to figure out strategies for keeping up with the appetite increase without blowing the calorie budget.

Day 2

Upon waking, I noticed tightness and soreness in my jaw and neck. Mild massage and stretching as well as acetaminophen helped the jaw soreness but the headache remained. I discussed this with Kayron when he visited and took a 2nd dose of acetaminophen at 3PM.

The RN from VNS visited again to observe my technique in preparing and connecting the infusion. Once he arrived we discussed the effects mentioned above and the fact that I was having some discomfort with the IV site so he moved the IV to different location.

My headache and metallic taste increased during infusion. Gauge set at 100 (2 hours and 45 min. duration)

My gait has improved slightly.

Vision issues are still intermittent.

Ability to focus seems somewhat improved.

Still feel very fatigued and a bit jittery; appetite increased; still very thirsty.


I realize that this is fairly clinical and sketchy but I don't feel too literary today.

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.