Life with MS & EDS

November 23, 2010

My Annual Fall Fall

Filed under: Uncategorized — by mseds @ 8:47 pm
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Fall would be my favorite season, but for some reason my health declines each autumn.  From 2001 – 2008, my optic neuritis would come each fall and be gone by spring.  Starting in 2008, it stopped going away in spring, but since then I get pain behind my right eye in November.  Also, I get awful acne, apparently from my rosacea, but I’m not convinced that is the cause.  Over the past month or so, I’ve felt the benefits of my CCSVI angioplasty slip away.  My hand strength is declining and my fatigue is increasing.  It’s pretty discouraging.  I had another Doppler ultrasound to see if my jugular veins are still open, but won’t know the results for a couple of weeks as the doc is away from the office.

I can’t figure out what it is about fall that brings about a decline in my health.  What is it about this time of year that throws my body for a loop?

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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!

April 27, 2009

Prednisone – Day Five

Filed under: Uncategorized — by mseds @ 1:09 pm
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I still don’t feel like myself, however I’m far better than last week.  I have a bit more energy today, although I feel like I’m in a fog.  Energy does not equal brain power, unfortunately.  Simple spreadsheets were more of a challenge than I expected this morning, but the haze is lifting this afternoon.  My hunger level is increasing today, too.  I feel like I could just keep eating and eating!  I’m trying to resist, but it’s not easy!

I saw the dermatologist today.  He wasn’t surprised that my skin reacted so well while on the steroids, but confirmed what I was reading that eventually things would swing the other way.  Although, since I had such a great response to the medication, he’s adding a topical treatment that should keep up the progress.  He prescribed Elidel, which is mainly used to treat eczema, but has shown promise in helping rosacea, too.  The side effects seem minimal.  There’s a slight risk of cancer, but I’d basically have to eat a few tubes of it, so that isn’t a big concern.  I hope the new medicine works!

At some point I need to start walking to get ready for the MS Walk this weekend.  I did okay walking at Sesame Place yesterday and am not in any pain from it today, but I can’t imagine that was more than a mile or so and I’m not sure going from that to 4+ miles this weekend without prep is a smart idea.  We just got Little Sister her first tricycle and Big Sister her first scooter.  Although it will be hot this evening, we’re going to try to get over to the playground at school to let them have some time with their new toys and for me to walk a bit.  Hopefully my energy will last through then.

April 25, 2009

Prednisone – Day Three

Filed under: Uncategorized — by mseds @ 4:58 pm
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I’m feeling pretty beat.  I woke up with energy, but it faded quickly.  Last night was very crazy.  Months ago I volunteered to run the prize room at Big Sister’s school’s spring event.  Sure, no problem.  I’m a pretty organized person and love to volunteer when I can.  Of course at the time I had no idea what this week would bring.  Never did I expect to be on steroid treatments while trying to manage something like that.  Overall the event went very well.  I wasn’t at the top of my game, but we pulled it off and I’m looking forward to doing it again 2 years from now (hopefully not while drugged!)

Today is our slow day of the weekend.  We finally got to see my mom who has been fighting her own illness (not yet sure what it is.)  We took the girls to see the Hannah Montana movie.  I even teared up for a brief part of it (I’ll chalk that up to the steroids!)  It was an okay movie.  Little Sister didn’t want to go (she doesn’t like leaving the house these days unless it’s part of her routine, like going to school) and was restless through all of it, except when she danced for the last song.  She sat with her sunglasses on for the first half, but afterward she admitted she liked the movie.  Tonight Big Sister is at a sleepover, so Little Sister gets the two of us to herself.  We just ordered a pizza because I’m too tired to cook.  So much for saving some money.

Tomorrow is the Sesame Place Challenge!  I can’t wait, although I really wish this weather would cool off.  It’s just too hot for April.

Oh, I found a positive side of the steroids.  My skin is the best it’s been in years!  It’s done wonders for my rosacea!  I can’t wait to see the dermatologist on Monday to find out why this is the case.

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