Life with MS & EDS

April 30, 2009

Prednisone – Day Eight

Filed under: Uncategorized — by mseds @ 7:39 pm
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Today was the first day I can honestly say I had any energy.  I made it through an entire day of work with no sick leave!  I actually think I was moderately productive.  I still don’t feel like myself.  My thoughts aren’t as clear as they should be and I still feel like there’s a wave of something over me.  I am edgy and my patience level hasn’t returned to normal.  Little Sister was screaming her head off this morning and I really felt the need to just get out of the house.  I couldn’t tolerate it.  Thankfully hubby got her on her way to school before I brought myself to depart.

My hunger level has reached a new high.  I didn’t think it was possible to want to eat this much in a day.  I’m trying to make healthy choices (e.g.,  oatmeal instead of eggs for a second breakfast; salad instead of junk-food in the afternoon; cereal instead of ice cream for bedtime snack), but it’s still three extra meals that I probably don’t need.  Of course this is only making the acid reflux worse and two Zantac 150s a day are not enough.  I need to get the eating under control and find out if there is other medication I can take or if I can take Zantac three times a day.  My throat is just burning and that makes me want to eat more to push down the acid.  It’s a vicious cycle.

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April 29, 2009

Prednisone – Day Seven

Filed under: Uncategorized — by mseds @ 3:03 pm
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While I still don’t feel like myself, I seem to be balancing out a bit.  My senses seem to be returning to normal.  My mood seems more balanced than it was last week.  My skin is still doing fantastic!  Unlike other accounts I’ve read, I can’t point to any MS-related improvement from the steroid treatment.  My left hand is unchanged.  Given the amount of lesions I have, especially on my spine (my chiropractor joked last night that I’m a walking lesion!) and my relatively low symptom rate, I’m writing this off as treating the symptoms I don’t yet know I have.  I can live with that.  Now if only I could handle my appetite.  It’s growing exponentially this week!  Good thing I’ll get moving off my tush this weekend.

April 28, 2009

Prednisone – Day Six

Filed under: Uncategorized — by mseds @ 1:37 pm
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I’ve been snapped back into reality a bit today.  Hubby had to have dental surgery this morning.  An infected tooth and a wisdom tooth, thankfully both in the same area, had to be extracted.  Our usual morning routine involves him doing most of the work to get the girls out the door, but today I helped out a bit to get us all out of the house.  Little Sister was glad to have be around during drop-off at school.  We even made it to the oral surgeon on time.  I think I’ve gotten past the morning-after-Ambien haze I had earlier in this process!

The surgery took a bit longer than expected, but seemed to go well.  The hard part was definitely afterward.  Hubby, lucky guy that he is, has never, ever been under anesthesia or even sedated before.  He’s in his mid-30’s, so I think it’s awesome that he’s made it this far without this wonderful experience.  He didn’t come out of the IV sedation very well at all.  He’s having a pretty awful time of it.  He’s barely staying awake and is certainly out of sorts.  He definitely didn’t know what to expect of all of this.  I’ve had 5 wisdom teeth out (yes, I had a spare they discovered 4 years after the initial batch was removed) as well as four other teeth extracted when I got braces.  At least this is a surgery I know something about and can stay calm.

It’s a nice, yet strange change of pace to be the care-giver for a change.  He’s always so focused on taking care of me.  I’m obviously not glad that he needed the surgery, but it’s forced me to step up my recovery a bit and snap out of the steroid-induced haze I’ve been in.

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 26, 2009

Fun Day at the Sesame Place Challenge

Today was the Variety Club’s annual Sesame Place Challenge.  It was a great day!  I must admit I was leery this morning.  Things were off to a rough start.  Everyone was in a mood.  Big Sister was exhausted from a sleepover party last night.  I was still wiped out from Prednisone – Day Four.  Hubby was in a mood, probably just anticipating the stress of the day.  Little Sister was in the best mood of us all.  She actually didn’t fight us about getting dressed or leaving the house!

We got to Sesame Place a bit before the 10 a.m. start time.  The parking lot was pretty empty in comparison to the normal season there.  We got in pretty quickly, got a locker for our stuff, and headed off to the rides.  Little Sister enjoyed the Flyin’ Fish ride.  We took her on the Peek-a-Bug, but she didn’t like that one.  After doing those rides together, it was time for Big Sister to split off and do some more exciting things.  Little Sister and I went on the merry-go-round, which she loved, and then we say the Abby Cadabby Treasure Hunt show.  It’s the same version we saw 2 years ago, but she didn’t remember that.  The people nearby obviously did because they kept telling their kids what was going to happen next and gave away the story.  She grabbed my hand whenever she saw a character in costume, regardless of how distant they were, but she was okay with them performing several yards in front of her.  This gives me hope for our Disney trip this summer.  Her endurance today was also a good sign. 

After that we spent a small fortune on a so-so lunch before hitting the water rides.  Big Sister’s mood left a lot to be desired.  She wasn’t very rational today.  Hubby went off and did some of the water rides while the girls and I hit the Tidal Wave pool.  I was fortunate enough to snag a chair and was very happy to sit and cool down.  It’s just wrong to have a 90-degree day this time of year in the Philly area.  The girls enjoyed splashing around and Big Sister even went off on her own for a bit.  To wrap up the day we managed to talk the girls into doing the Lazy River.  That’s right up my alley! 

We fit a lot into our 5 hours there.  People were generally very nice and more understanding of other people’s kids than you’d usually see at places like this.  Most parents looked tired like we did, but you could tell they just loved watching their kids having fun.  Strangely, I think my favorite part was when we were leaving lunch.  We ate upstairs in one of their restaurants and on the walk down Little Sister held my hand and actually ALTERNATED feet going DOWN stairs!!!  She just started alternating her feet while climbing stairs on her own about a month ago.  This is such fantastic progress for her!  Definitely a major SmileStone. 

Thanks Variety Club!!

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.

April 24, 2009

Prednisone – Day Two

Filed under: Uncategorized — by mseds @ 9:40 am
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I’m starting to feel a bit better.  My arm doesn’t hurt as much as it did yesterday.  I feel a bit more alert, although still very tired.  My mood seems more even tempered.  My senses remain  in overdrive.  Lights and sounds are still more intense than they should be.  I feel like I have pregnancy nose again, but without the nausea.  I can smell things clear across the house that I could normally only smell from steps away.  I also have the chills at the moment, but that’s not too unusual for me.  The steroids have made me so warm, perhaps I’m just slowly returning to my normal state.

I’m grateful that GG asked about the dosing times for the Prednisone.  I called the pharmacy last night.  Today I’m doing two at breakfast and two at lunch.  I think that will go far better than yesterday’s routine.  It’s been months since I was that awake at 11 p.m.!  The sleeping pill did eventually help me get some sleep until 6.

Last night I finally got out of the house for a bit.  It was my first time out since Sunday.  It was nice to hang out with a friend for a bit.  This morning I even took a drive to drop off Little Sister at school and treated myself to coffee and a soft pretzel on the way back.  Not that I need the extra food!  I’ve gained about 7 pounds this week.  I don’t feel like I’m eating too much more than normal, so I imagine I’m retaining fluid.  The MS Walk is coming at a good time.  I need to get moving!

Oh, last night my Copaxone shot didn’t go well.  I’m not sure if it was just poor form on my part, but it bled a lot more than normal.  It was in the same arm that I had the IV in and where they had given me doses of Heparin to keep the IV line open.  I’m not sure if that had anything to do with it or not, but it was very strange to see more than a drop of blood after the shot.  Has anyone else ever had that happen after a Solu-Medrol treatment?

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