Life with MS & EDS

August 20, 2010

CCSVI – 3 Weeks After Angioplasty

Filed under: Uncategorized — by mseds @ 4:07 pm
Tags: , , , ,

I must admit that today is the first day I’ve felt exhausted.  However, given the day I’ve had, I think anyone would feel exhausted, so I’m trying not to read anything into this.

The day started with Little Sister waking up with what seemed to be a couple of sores on her left arm that didn’t look right.  They seemed to have pus in them.  She complained that they hurt.  Her skin looked irritated, so I covered two spots with band-aids and called the doctor as soon as they opened.  I swear calling the pediatrician for an appointment is like trying to get concert tickets before the Internet.  I managed to get one of their first appointments, so we got ready for the day and rushed out of here.

While at the doctor we talked about her various skin problems.  She’s only 6, but psoriasis and it’s been pretty bad this summer.   Hydrocortisone  cream 2.5% seemed to clear a lot of it up on her back, neck, front, and arms, but it still looks bad behind her ears and on her belly button.  She has terrible cradle cap on her scalp, too.  We’ve been using Head & Shoulders every other day this week, but no progress yet.  So, we had a long discussion about Little Sister’s skin and will be going to the dermatologist in a few weeks.  The doctor managed to clean off the gross looking areas on her arm and eye lid.  I wasn’t about to chance that at home and thankfully the doctor didn’t think I was crazy for not attempting that before calling.  There’s a good chance that they were just boogers (go figure), but she said that they hurt and I wasn’t about to question her.  It’s really hard to know what physically hurts her and what is a sensory reaction.  I swear if you put fake blood on her skin when she wasn’t looking and then she noticed it, she’d say it hurt and would cry.  If even the slightest thing looks wrong on her body, that’s just as bad as something actually being wrong.  I still don’t understand sensory processing issues, so she throws me for a loop every now and again.

After that we headed to camp and of course encountered road closures along the way.  It’s nice that they are fixing our roads, but driving around the area right now is challenging.  Thanks to the GPS, we only drove around an extra 10 minutes.  As soon as I dropped them off and was glad to get back to work, I remembered that I had to get to the dentist!  I was so focused on my daughter that I forgot about me.  At least I remembered with 45 min. to spare before having to leave.

Things went well at the dentist.  I needed 2 fillings, both on the right side, but top and bottom which required 2 separate shots of novocaine.  He apologized for the pain and I said it hurt less than my Rebif shots.  I think this is the first time I’ve had dental work done since starting any of the CRAB drugs.  It was kind of shocking to realize that novocaine hurt less than Copaxone or Rebif.  We had a nice discussion about how there needs to be pills for MS treatment and branched into a discussion about how messed up it is that pharmacuital companies aren’t in the business of helping people, but are all about their profit margin.  It was a nice way to pass the time.

I left the dentist with the whole right side of my mouth and most of that side of my face numb.  If that wasn’t enough, I’ve been having MS problems with my mouth again.  This week was the first time I’ve noticed this in a while and certainly the first time since angioplasty.  My upper lip, left side gets pins-and-needles that come and go.  This week I’ve noticed that this part of my lip hangs lower than the other side, although not consistently.  I called Dr. Generalist earlier this week and we decided that monitoring it was the best approach at the moment.  I don’t see any reason to go on steroids for this.  My MRI in June was clean and I don’t have any other relapse signs.  The only good part about all of this is that I could justify a Rita’s Gelati for lunch.  Yum.

The moment I pulled into the driveway, my cellphone rang.  It was camp.  I needed to bring Big Sister a change of clothing.  Lovely.  Just what I wanted to do was another trip to camp.

I managed to put in another hour of work before going back to camp to pick the girls up for the day.  Now I get to make dinner (as soon as I can feel most of my mouth again) and wait for Little Sister’s new DAFOs to be dropped off.

What I really want to do is crawl into bed.  But, that’s not quite an option yet.  I can’t wait for my husband to get home from his business trip.  I handled the rest of his trip just fine.  I was proud of how much energy I had and that I was doing things so well.  Then today came.  I need to remember that opening my veins didn’t make me superwoman.  It certainly helped me a lot, but I shouldn’t expect to be invincible.  I think anyone would be tired after all of this and I just need to keep reminding myself that even typical people become exhausted every now and again.

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3 Comments »

  1. I think this day would have brought Superman to his knees! Hopefully you can get some rest in to recovery.

    Comment by posey — August 21, 2010 @ 2:54 pm

  2. Good grief, as I scrolled down I couldn’t believe the day got more and more stressful and complicated. I am not in the slightest bit surprised you are tired!

    Just a thought and it may not be relevant in this instance but my daughter’s dermatologist banned head & shoulders as he said there is a chemical in it which can actually exacerbate this. Me being me can’t remember the name of it. What did help chronic cradle cap was olive oil! Messy yes but massage as much olive oil into the scalp as is possible if bearable leave on over night then wash out with a gentle shampoo without chemicals in. What also helped afterwards for irritated scalp was a tar based shampoo we had on prescription *no name again I am afraid. But daughter is now 20 and she was young so please forgive me my forgetfulness!

    It sounds as though you could do with some TLC!

    Take care.

    Comment by Achelois — August 21, 2010 @ 7:55 pm

  3. So glad to hear that you are doing well energy-wise, and tackling things one day at a time. My daughter is 19, but I had my niece over for the whole day, and she is 8 years old. Was I ever pooped when she went home. We had a great time, but I was really exhausted. I didn’t have anything left in the tank!!! These crazy days like you had are usually few and far between. Now you can be tired like an ordinary person and yes, ordinary people do crawl into bed sometimes, too!

    Comment by karen — August 23, 2010 @ 10:57 pm


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