Life with MS & EDS

October 2, 2009


Filed under: Uncategorized — by mseds @ 9:32 am
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Today I’m more tired than I have been in a long time and I’m trying to figure out why.  I had a particularly busy few weeks (hence my lack of posts!), but this week was pretty calm.

Could it be that I’m finally exercising?  I just joined a gym and actually got there twice this week!  I figured my plan to lose weight by eating better wasn’t working, so it was time to try something else.  I found a place nearby that has an awesome family exercise room with a moon bounce, climbing area, etc. for the kids and bikes, treadmills, stairmasters, etc. along the outer edge for the adults.  The girls LOVE it and it gets us working out.  I even got to the pool with Big Sister one evening.  She’s recently overcome her fear of water and I love doing water aerobics.  I learned quickly that I can’t do land and water exercise on the same day.  Our first time there, I over did it.  I rode on the bike for about 35 min. and walked on the treadmill for about 15.  That afternoon we went to the pool and I did a couple of laps and some water walking.  That night my hips were in such pain!!!  Splitting things up this week worked much better and I didn’t have any pain.  But, I do think my body may be demanding more rest to make up for all of this!

How about lack of Vitamin D?  I started taking supplements a month ago.  I take them when I do my Copaxone shot each evening, but sometimes forget.  I realized that I’m more tired the following day if I forget the supplement.  But that could just be that I was tired enough to forget to take it in the first place, so that may or may not be the cause.

Maybe it’s my diet?  I’ve eaten a ton more salt this week than I usually do.  I fasted on Monday for Yom Kippur and hosted the break-the-fast meal here.  We ended up with a lot of leftovers, consisting of mostly high-sodium foods like lox, smoked salmon, whitefish salad, etc.  Since I couldn’t let such great food go to waste, I’ve been eating it (see why I needed to join the gym?!)  I know there’s been a lot written about the importance of an anti-inflammatory diet and I’m sure I’ve been doing the opposite this week.  It’s time to get back to VitaMuffins for my morning snack instead of lox and bagel!

Perhaps it’s just the season?  Every October my optic neuritis gets worse.  I love fall and cooler temperatures, but my MS symptoms increase.  I’ve not been able to find any information on the seasonal nature of MS, but this has been happening every fall since 2001!  It seems strange to me that fall would be the trigger and not summer.  I’ve been complaining about my eyes the past couple of days.  This morning I realized that my vision in my right eye is a bit foggier again.  My next brain and spine MRI are in a couple of weeks and I’m so curious to see what it shows.

Maybe I’m just doing too much and need more sleep!  While I should probably stay home and rest this weekend, we’re heading down the shore for the MS Bike 150.  My husband is volunteering and the girls and I will be there to cheer on and thank the awesome riders!

May 10, 2009

Happy Mother’s Day!

Filed under: Uncategorized — by mseds @ 9:37 pm
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I had a fantastic Mother’s Day!  It started with breakfast in bed courtesy of Hubby and Big Sister.  They got Little Sister involved just before bringing it into me so that she could join in the fun, too.  I got to eat breakfast all by myself and got to watch the morning news for a change.

After that they headed off to Sunday School and I got to have the house to myself.  I cooked almost all of my favorite recipes (zucchini bread, baked brie, corn cheese quiche) while listening to my favorite CD, at top volume, of course.  I actually like to cook when I have the house to myself and can concentrate and when I don’t get interrupted or side-tracked.

We had our moms over along with my aunt and dad for a nice brunch.  I ate far too much and only have 1.5 Points left in my weekly bank that will have to get me through Tuesday, but it was all so good!  Last time on Weight Watchers I learned not to beat myself up for rare splurges, so I don’t feel bad in the least.  It will all balance out and the important thing is that I’m not eating like this everyday anymore.

The girls gave me such sweet presents, all of which were handmade.  Little Sister actually wrote her name in the card she made me at school!!!  That brought a tear to my eye.  She usually flat out refuses to write her name.  She’s working on it with her occupational therapist, but it’s a real challenge for her.  She’s very stubborn and usually refuses to even try.  She won’t even trace the letters if we draw dotted lines on cards.  Some letters were backwards or a bit twisted, but it was obviously her name and I’m so proud of her!

Happy Mother’s Day everyone!

May 4, 2009

Prednisone – Day Twelve

Filed under: Uncategorized — by mseds @ 6:13 pm
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Finally, it’s my last day on Prednisone!  The end of this steroid treatment cycle has arrived!  Wahoo!  What a crazy two weeks this has been.  The past couple of days while on just 20mg have been pretty good.  I still have the metallic taste in my mouth, my senses are still heightened, I’m still wide awake at 11 p.m., I’m still overeating, and my reflux is still bad, although not as bad as it was.  My mood has returned to close to normal.  Unfortunately, my rosacea is also returning.  Oh well.  I knew clear skin was too good to last.

I’ve honestly not noticed any change in my symptoms after doing the steroids.  I actually developed a new symptom the middle of last week.  In addition to the tingling in my left arm that started last month, I now have a top lip that quivers, mainly left of center.  It’s not very noticeable and it comes and goes, but I can feel it and Hubby can see it if he looks very closely.  That’s two new symptoms in a matter of a month.  Hopefully this will slow down!

I’m not happy with the amount of weight I’ve gained in the past 6 months.  I think it’s about 20 lb., including the steroid-weight gain.  Tomorrow will be my first day off of the drugs, but it’s also Little Sister’s dental surgery.  So, starting Wednesday, Hubby and I are doing Weight Watchers again.  We shook on it tonight.  After Big Sister was born, I lost 50 lb. doing WW before Little Sister was born.  I’ve put all of that back on and more.  It’s time for it to go.  The MS Walk this weekend got me moving.  I need to keep that up.  I also need to stop eating like crap.  I’ll allow for emotional/stress eating tomorrow, but then we’re counting Points starting Wednesday.  Last time I had at-work meetings for support and accountability.  Since I telework and don’t have easy access to meetings, I’m going to go it alone, with just Hubby and friends who also count Points, and will try to use the blog to hold myself accountable.  We’ll see how it goes!

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