Sunday, May17

Today was another mild and sunny day.

After being too fatigued to get to the Mass we usually attend, I was able to get up and out for 9 AM Mass this morning. We left immediately after David, my husband and Meka, my assistance dog returned from the morning walk.

Because this is not the service we usually attend, we were able to see and greet a number of fellow parishioners that we don't usually get to see.

When we got home, we did a few of our morning routines that we didn't get to do before we left (medications, read a bit of the Times, did a couple of exercises) then I made an omelet with shallots, plum tomatoes, feta cheese, olives, basil, served with a garnish of arugula leaves for the two of us. It was more like brunch in terms of timing.

We had a relaxing day; made and received a few phone calls, did some email and SparkPeople stuff, watched "On the WaterFront", which I'd never seen all the way through, even took a brief "lie down", had a small snack.

After the movie, David took Meka out again while I went to the YMCA to join up. I brought my suit with me and used the pool for the first time.

I use a wheelchair due to mobility difficulties due to my MS. The pool provides a means for me to do physical exercise which does not cause the same level of fatigue and overheating that many other forms do. It also reduces that pesky hold that gravity usually has on me (until I get out, when I notice the work I've done).

The changing area and shower are small but manageable for me since I can stand and transfer and walk short distances.

The pool has a water powered lift which makes getting into and out of the pool much more "do-able"

I went during the "Recreational Family Swim" time and used the time to do many of the exercises I did during the Aquatics program that just ended, along with stretching, water jogging and finishing with a short swim. I stayed just short of an hour and then wended my way home.

I'm going to try to do the Water Aerobics tomorrow.

I'm thinking about beginning a new craft project soon-looking for the right inspiration.

Here are a few projects past...

Time to Switch Gears

After a very gray day yesterday, it was a bright sunshine-y day today; always good for my mood.

Early in the day I had all kinds of thoughts about getting out for a while.

Did some stretching and a few strengthening exercises.

Got involved doing email, SparkPeople, some online genealogy research, spoke on the phone a bit and did a bit of housekeeping, then got dinner.

One other thing I did accomplish was to generate some ideas about fun things to do (possible vacation or stay-cation ideas).

By late afternoon I was pretty fatigued.

Total non-sequitur, but thought I'd close with a view from our window:

May 14, 2010 (Not feeling too creative in the headline department)

It's been threatening rain all day today, so I'm glad we seized the day and did a Trader Joe's run yesterday. The rain held off during the day but I just heard some thunder.

Today was my second day without any prednisone.

Things are beginning to settle and I'm more able to see what my functioning is actually like.

Earlier in the week, I did my last Aquatics class of the series on Monday and went to Occupational and Physical Therapy appointments on Tuesday.

It was interesting that I was able to complete the sets of strengthening exercises that I usually do, however, I would not have been able to do any more than that. Several weeks before my flare up, I could have, and did, do two to five more than the set as given, if I felt able to do so.

When it came to the balance portion of my session, I was able to some tasks at almost the level I usually do, but was easily fatigued, and of course as I became more fatigued, my balance got worse. The tandem walk was really poor.

It was good to see what was really happening in terms of the routines I had been doing. I now have a baseline from which to judge my progress from here on.

By next week, I hope that I'll be all set up with my YMCA membership which will mean at least one session in the pool per week and more if I can manage it. That is, by far, my most preferred mode of exercise.

In the meantime, while I still have a bit of a "buzz", I figured that I would get going on some exercise time, particularly since I wasn't able to do much in the way of exercise for the past several weeks, due to the fatigue I was experiencing due to my flare and the subsequent medication course.

Wednesday, I tried out my new SparkPeople CardioBlast DVD (Walk it Out Workout), previewed the Fitness Starter DVD and used the Inflatable Balance Board that I ordered.

Thursday I did some strengthening exercises and the Inflatable Balance Board. At this point I can just about stand with two feet on the board for one minute at a time.

Today I did the one mile easy walk using the Leslie Sansone DVD and the most of the Resistance Band workout on the Fitness Starter DVD.

Of course, I was not able to do any of these workouts without stopping several times but I did complete them.

I know that there will be times when I won't be able to do what I've planned, but I want to know that:
A. That I'm doing some exercise on a regular basis
B. I'm doing what I can, when I can

In the meantime, I'm increasing my intake of fruits and veggies.

Trying to put it all together...

Something's brewing weather-wise today...It's been looking threatening all day and there's been thunder and lightning this evening. I'm glad that I decided to do my Trader Joe's run yesterday.

I've recently been treating a flareup of my MS and have been tapering off the medication. Today was my second day without any prednisone.

Late last year I began to work more seriously on weight loss by logging my food on SparkPeople.com and have been maintaining a blog there.

When this flare-up got to the point that the Neuro and I decided to treat it, I was particularly concerned about the potential for weight gain both as a side effect of the medication and as a result of increased appetite, also side effect.

That brings us to now.

Things are beginning to settle and I'm more able to see what my functioning is actually like.

Earlier in the week, I did my last Aquatics class of the series on Monday and went to Occupational and Physical Therapy appointments on Tuesday.

It was interesting that I was able to complete the sets of strengthening exercises that I usually do, however, I would not have been able to do any more than that. Several weeks before my flare up, I could have, and did, do two to five more than the set as given, if I felt able to do so.

When it came to the balance portion of my session, I was able to some tasks at almost the level I usually do, but was easily fatigued, and of course as I became more fatigued, my balance got worse. The tandem walk was really poor.

It was good to see what was really happening in terms of the routines I had been doing. I now have a baseline from which to judge my progress from here on.

By next week, I hope that I'll be all set up with my YMCA membership which will mean at least one session in the pool per week and more if I can manage it. That is, by far, my most preferred mode of exercise.

In the meantime, while I still have a bit of a "buzz", I figured that I would get going on some exercise time, particularly since I wasn't able to do much in the way of exercise for the past several weeks, due to the fatigue I was experiencing due to my flare and the subsequent medication course.

Wednesday, I tried out my new SparkPeople CardioBlast DVD (Walk it Out Workout), previewed the Fitness Starter DVD and used the Inflatable Balance Board that I ordered.

Thursday I did some strengthening exercises and the Inflatable Balance Board. At this point I can just about stand with two feet on the board for one minute at a time.

Today I did the one mile easy walk using the Leslie Sansone DVD and the most of the Resistance Band workout on the Fitness Starter DVD.

Of course, I was not able to do any of these workouts without stopping several times but I did complete them.

I know that there will be times when I won't be able to do what I've planned, but I want to know that:
A. That I'm doing some exercise on a regular basis
B. I'm doing what I can, when I can

In the meantime I'm increasing my intake of fruits and veggies, too...

Coming to the end; starting at the beginning...

This most recent group of blog posts were begun to help me both document and cope with this recent flare-up and its treatment. Since that particular aspect is coming to close, I thought that I might reflect a bit on what's happened.

The timing of those posts also coincided with a decision on my part to to make use of the many resources available on SparkPeople.com and to involve myself more in the community there, which is definitely a major resource.

As I wrote about my own experiences and responded to comments, I clarified and expanded my own thinking and perception.

As I read other members' blogs and pages and wrote comments, reaching out in recognition and support; reflecting upon the thoughts they expressed; I was able to see our common concerns and struggles and put my experiences (and those of others) in perspective in yet another way. I was frequently touched.

So, while I was blogging about an MS exacerbation, medication and side effects and attempting to avoid having my weight management efforts derailed by those things, I was also letting myself be known and sharing my perspectives on my life. Other members' expressions of support validated my experience and concerns and gave me further issues to ponder. I was able to get back to exercise as soon as I could (probably sooner than I might have if I hadn't been using the site).

I'm now trying to figure a way to make sure that I continue what I began once the urgency of this particular set of circumstances is ended. I'd like to expand on what I've begun.

One of my tendencies in the past has been to get caught up in the everyday, and then,before I know it, it's weeks or months between posts...

On the subject of food, I've been devouring a package of arugula for the past couple of days, as salad and sandwich ingredient. Tonight there was some left and I wanted to use it, as well as some parsley and basil, before it was past its prime; so I made pesto and served it with whole wheat pasta. Most of the time I only make it with a single green ingredient, basil or arugula. I was quite pleased with the "multiversion".

I also made a relatively low calorie bread puddings, with 1% milk that came out very well. We had it for dessert tonight and it will be available for a couple of more days.

Below is a photo of a couple similar bread pudding from times past:

May 10th-Progress and Community Building

This morning I was able to go as planned to the Aquatics Program that began in March.

The program was a time limited research program run by the School of Health Professions at Long Island University,Brooklyn Campus, which is, happily, right across the street from my home.

I was really pleased to see that I was able to participate fully and with less limitation than a couple of weeks ago It was great to see it through. Since I'm still winding down on my prednisone, I was concerned that I might have some rebound of my symptoms.

Today was the last session of the series and I was glad not to be a "drop out"..

While I was tired, I didn't need to crash immediately. I did take a nap later in the afternoon.

Since it's a research program they did pre- and post- program physical therapy evaluations. Those measurements will be available to participants as soon as they are able to be analyzed and reported if they wish to have them. I am going to request mine because I think it will be useful.

Tomorrow I go to my regular Physical and Occupational Therapy sessions with half the amount of medication aboard than I had today, so we'll see what happens…

Another recent development with relationship to SparkPeople is that in addition to becoming more active on my blog, I've also been reading blogs by other members and more of the articles as well as using other resources. It does help to be more involved in the community, giving and receiving support!

It is one of those lessons that I get to learn over and over again in different parts of my life.

I'm heading off to bed pretty soon and am ready to get into a calmer space.

Below is a cloud photo:

May 9th, Mothers' Day

I'm pretty tired but I wanted to post, both to reflect on the day and to hope that yours was as you wished it.

As I've been mentioning for the past couple of weeks, I'm embarked on a course of steroid treatment for an exacerbation of MS. I'm currently tapering off.

This is always a process involving many unpredictable variables and effects.
I haven't done it for quite some time and never in the midst of a weight management effort.

Mothers' Day and the whole week before it has provided the opportunity for a great deal of reflection.

I've found myself thinking a great deal about my Mom and my two grandmothers; all the things that I learned from them and the relationships of love and caring that surrounded them.

I miss them and yet still have them with me everyday.

In turn, I also had the opportunity to muse on my relationships with my husband and sons.

We celebrated our 31st Wedding Anniversary on Wednesday.

It is amazing to consider the speed with which two baby boys turned into 30 year and 29 year old men who have begun their own lives and families; quite dizzying and not without conflict and disorientation.

I was lucky to have a Mothers' Day greeting call with the elder, who needed to work today and an invitation for my husband and me to a local restaurant with the younger son, his significant other, her son and mother.

We had a lovely, relaxing and delicious meal in a Spanish restaurant.

The dinner posed a challenge to my SparkPeople member identity but I'm actually pretty pleased with my response which was of planning and flexibility. I made conscious choices and not random reactions; looking over the menu ahead of time to plan and making food choices earlier in the day to allow some leeway. As it was, I'm pretty sure that I logged everything and while I wasn't present in the kitchen, my best estimates tell me that I ended the day within my calorie range.

Yes, I could have been heroic and passed on the tapas altogether, but I wasn't and didn't. I did, however, limit myself to small portions and resisted the pull of the "clean plate club" into which my dear Mom and Grandmother initiated me when I was a child, with all the best intentions. (It's OK gals, you got me through childhood and it's up to me now!)

Even if it turns out that I made a mistake or so and the total went above the range, it's not about the numbers, but the choices.

The medication and the flare also put my exercise pattern off but tomorrow I'm returning to the Aquatics Program I began in March. It's the last session of the series.

In addition to my Physical and Occupational Therapies, I'm planning on taking advantage of a Summer Promotion at the YMCA and joining sooner, rather than later so that I can get back into a kind of exercise that I think has been really useful and start building back up.

Did I say I was tired? This was much longer than I'd planned.

I hope your day was as full of love and learning as mine, no matter where you are on the "motherhood spectrum". 211

Below are photos of my mom and me and the boys and me.

Step Down...

After yesterday's high point, I'm having a bit of a low; more in terms of energy than of mood.

I've also had a scratchy throat and stuffy nose, but likely that's allergy related. (That's my story and I'm sticking to it! But just in case it's a cold, I'll take the extra rest.)

We did do quite a bit yesterday and I went from 60 mg. yesterday to 40 mg. today, and there is a weather front coming through with large wind gusts, so a bit of a change in energy is not too surprising.

We have plans with family to eat out at a local restaurant for Mothers' Day tomorrow so I decided to just go with the flow today and rest as much as possible.

Both Meka and I were getting a bit "antsy" by early evening so I took him out briefly but we didn't get too far. The wind gusts that were being forecast started in earnest and we hustled ourselves back home. It was quite alarming.

The last walk of the evening was almost equally brief because of similar conditions.

I've really had an increased appetite today and due to the throat issues I've been hydrating like crazy. I worked hard not to go overboard and though I've ended up at the top of my calorie range for the day; didn't go over.

Thanks to all who've expressed support!

Here are some tulips for all of those who nurture me and you- the true description of Mothers.

Happy Mothers' Day!

Oh What a Beautiful Morning!

OK, so it was more like afternoon ish...

But is was beautiful; sunny, clear, warm but crisp...little bit of a breeze...

Did I say sunny??? Did I say it was the first day out of the house for seven days except for a mercy dog walk??

Then maybe you get the picture.

My health aide and I went down to Trader Joe's to do some shopping, then to a wonderful local ethnic and specialty grocer on the next block (hadn't been there in ages and she'd never been there-so got to show her around).

Then on the way back home we stopped at the YMCA to check on the terms of membership and take a tour, particularly of the pool. We liked what we saw and since they were having a Summer Promotion, there was additional incentive to do it sooner rather than later.

We had a great time, talking and joking and laughing most of the way there and back.

She was also excited about it and she's going to get her own membership.

Since part of her duties include escort and assistance with exercises, if required, this is a reasonable way to use her time when I go and to gain some benefit too.

By George! I think I've started a Spark!

Two Days More...

Yesterday was my first day on oral prednisone, which is the method used to taper off from the truly high doses of the first three days of intravenous infusion.

It really felt great to be free of "hardware" and to be able to take a shower without wrapping my arm in plastic wrap.

One of my husband's sisters was visiting from California and staying with another sister in Nassau County (not too far).

She came in on the train to Manhattan and my husband met her there after concluding some earlier appointments, did a bit of sightseeing with her and then returned here to Brooklyn, at which point my other sister-in-law and her husband drove in and arrived at just about the same time.

I had planned on ordering in but upon thinking about it, I decided that whatever my taste buds might be telling me that I might want (Thai, Mexican,Italian) might not go down well with my intestinal tract.

I remembered that I had some IKEA meatballs in my freezer and so I made a sauce, put the whole thing in the crock pot, made some noodles, and dinner was ready when we were with minimal exhaustion factor.

Also, I knew exactly what the calorie counts were and could manage my portions more intelligently.

We had a lovely visit and dinner. They brought a decorated cake which added to the celebratory spirit of the day.

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.