Life with MS & EDS

July 21, 2009

Reality

The past several weeks have been pretty decent.  I finally felt the positive effects of the lovely Solu-Medrol steroid experience.  Still being awake at 11 p.m. as opposed to exhausted by 8 p.m., not having any numbness in my left arm, and having still lips was worth it.  Never thought I’d say that!  Lack of exhaustion was certainly the best part of things.

Life has been keeping me pretty busy and certainly quite occupied.  The girls are having a great summer and we’re getting down the shore pretty often.  As a full-time teleworker, I’m fortunate that I rarely ever have to travel.  However, the past 4 weeks brought 2 unexpected trips.  One was for training in Baltimore and last week I ended up in Chicago for a great meeting (yes, surprisingly those do exist.)  It was my first time flying with Copaxone.  I put everything into that blue plastic travel case, shoved it into my laptop backpack and off I went.   At the security check-point, I unloaded the blue box along with my laptop, BlackBerry, iPod, and shoes (thanks a lot, shoe bomber, for making me have to stand where thousands of other people have stood without their shoes on – yuck) and through the metal detector I went.  As I was walking through, the TSA guard asked what was in the box and I said it was my medication.  He said I didn’t have to put that through separately.  Nice to know, but it just seems safer to pull it out than to have them wonder what these pre-filled needles are on the x-ray monitor.   I took it out on the return trip, too, although those people didn’t say anything.

Later this month we’re taking a family trip to Disney and I cannot wait!  I’m concerned about the heat as well as how much walking Little Sister will be able to do.  To test things out, we didn’t take the stroller on the boardwalk this past weekend.  She made it about a mile before she started complaining.  My husband, complete with a very  sun-burned back, had to carry her home the last 3 blocks.  This was without her DAFOs and with little stopping.  I can’t imagine that we’ll have an uninterrupted mile+ long walk while in Disney, so I think we’ll be okay.  I’ve built in break time and will arrange for shows, longer rides, etc. to split things up.

Planning these trips has been a nice diversion.  I’m also hosting a birthday party for my best friend 2 days after we return from Disney.  Having things to plan is a great way to occupy time.

Yesterday also brought great news!  When we moved here a few years ago, my work was stable, but my husband has been dependent on contracts, which have been slow coming the past 2 years.  After a bit of a drought, he got a great contract about 2 months ago.  It was fantastic to know that things would be steady for the next 6 months.  Never in a million years did we expect he’d get a call last night with an offer for a full-time job!  It’s also full-time telework with minimal travel!  We are so fortunate.

So, as you can see, things have been going pretty well.  Aside from that strange instance of vertigo and my eyesight not improving, health-wise things have been unremarkable.  I’ve been a bit more tired lately, but I’ve also been very busy.  I’d like to blame it on that and not the effects of the steroids going away.  I don’t want to do those again anytime soon.  Even my hip, which was giving me a lot of pain when walking long distances, has been great!  Walks on the boardwalk used to do me in, too, but I think the monthly chiropractor appointments are really helping.  It’s strange how being in alignment makes such a difference.

Reality has sunk in that I have MS and that’s just the way things are.  This was my primary focus for so many months.  It’s nice to have these other things to concentrate on now.  I suppose I’ve reached the “acceptance” phase.  Reality did creep up on me last night though when I was doing online check-in for the Breast Cancer 3-Day.  Phase One includes a medical questionnaire.  For the first time I had to check off “other” and put in not only Ehlers-Danlos (which was new last year), but also “Relapsing Remitting Multiple Sclerosis.”  Honestly, I don’t think I’ve ever written that out before.  Heck, I never even spell out MS anymore.  I found myself checking the spelling to make sure I had it correct before hitting submit!

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1 Comment »

  1. Traveling with meds is fun. Hubs has a wallet card to hand out if he gets pulled aside for a pat down.

    Glad to hear the summer is going well. For Disney, remember you can rent a stroller if you need one. It sounds like you have everything well planned, but at least there is a back up plan. Their strollers are great to throw drinks in, too.

    Comment by Posey — July 21, 2009 @ 10:49 am


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