Life with MS & EDS

June 23, 2009

Traveling with Copaxone

Filed under: Uncategorized — by mseds @ 10:18 pm
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Since starting Copaxone back in February, I’ve avoided traveling.  I telework from home, but my office is in D.C.  I traveled down last month, my first trip down since last fall, but stayed at a friend’s house so that I’d have access to a freezer (for my ice pack) and a microwave (for my heat pack.)

This week I had the opportunity to attend a conference.  I need the training credits to maintain my project management certification, so I decided it was time to figure out how to make a hotel stay work.  I’m afraid of doing shots without heat and ice, so I had to work out a way to get those things without microwaves and freezers since staying at a suite wasn’t an option.  I discovered that glove-warmers (those things you snap or shake to warm up) make fantastic heat packs.  I also remembered those old-fashion ice packs that you unscrew and fill with ice.  All hotels have ice machines.  I’ve never used them before, but I finally have a reason to need them!

Tonight’s shot took longer than usual, but it went well!  I should have read the glove warmer instructions sooner.  Once exposed to air and shaken, it takes about 15 – 30 min. to get hot.  Other than that delay, the glove warmer and ice pack bag worked just as well as my standard routine.  It’s nice to know that I can travel without worrying.

Tomorrow’s challenge will be reaching my shot location.  It’s one my husband usually helps with, so I have a feeling I’ll be finding an alternate location instead.

June 19, 2009

Arms, where did we go wrong?

Filed under: Uncategorized — by mseds @ 9:29 pm
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Arms, what happened?  You were once a favorite shot location.  Other folks thought I was crazy, but I defended you.  Now you’re as bad as thighs!  Each arm shot now hurts the moment I press the AutoJect trigger.  Pea-sized seepage comes out as soon as I pull out the needle and there’s occasionally blood, too. What changed?  How did things go from so good to just horrible?  I’m so tempted to swear off shots in any appendage and stick with the middle of my body.  Shots there are so much easier.  Could sticking with just the tummy, hips, and tush be all that detrimental?  I’m seriously tempted to find out.

June 10, 2009

Big Day for Little Sister

Filed under: Uncategorized — by mseds @ 8:27 pm
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Today was a big day for Little Sister.  She lost her first tooth and had a ballet/tap/gymnastics recital tonight!

Big Sister had a friend over after school and Little Sister was upset that they didn’t want to play with her.  She was up in her room screaming and crying.  I started making dinner and eventually she came downstairs.  I went over to give her a hug and she hands me her tooth!  Of course I made a big fuss.   I figured it had just happened.

About 30 min. later she tells me that she’s been keeping her tooth in her pocket.  I asked when it fell out and apparently it happened at school this morning!  I asked why she didn’t say anything, but she didn’t have a reason.  She knew that if it fell out that she had to put it somewhere safe until she could put it into her tooth fairy box.  While I think it’s weird that she didn’t tell anyone at all, I’m glad I got to be the first one to find out!

We expected the worst for her recital tonight.  She’s been participating as best she can during ballet, but usually spends tap making funny faces in the mirror when she’s not trying to hold onto the wall or table so that she doesn’t feel like she’s going to fall over.  She just doesn’t seem confident in tap shoes.  During gymnastics she likes running around, but the rest is a challenge, so she tends to goof-off.  Tonight she did fantastic!  I was so proud of her.  She certainly wasn’t the best in the class, but she tried so hard tonight and you could see how proud she was of what she was able to do.  She even tried some tap moves without holding onto something.  It was great to watch!  I also appreciate her teachers for working with her at her level.  They even brought out the balance beam that stays on the floor so that she could do the beam part.

All in all it was a great day for her!  It snapped me out of my blogging drought that was brought on after her IEP meeting a couple of weeks ago.  It got me down and I’ve been meaning to write about it, but just haven’t had the time.  I’ll try to write more about that in the next couple of days.

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