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.

August 11, 2010

CCSVI – The Downside of Angioplasty

Filed under: Uncategorized — by mseds @ 2:57 pm
Tags: , , ,

It’s been almost two weeks since I had angioplasty to open my jugular veins and I’m beginning to notice the downside:

1.  I am stuck cleaning the house -I have more energy now, so I can’t just sit there while others clean up around me.

2. I do more dishes – Since my sense of smell has returned, stacks of dirty dishes drive me nuts.

3. Less computer time – I’m starting to exercise, so my time spent on addictive computer games is diminished.

4. Summertime + being more active = more sweat.

I look forward to seeing what negative I discover next!

August 4, 2010

CCSVI – A Few Days After Angioplasty

Filed under: Uncategorized — by mseds @ 8:34 pm
Tags: , , , , ,

I had intended to try to write every day, but have been quite busy and have had less time at my laptop than I expected.  Day 2 after angioplasty brought a trip to a new children’s museum with the family.  I walked around all afternoon, making myself sit down every now and again so that I wouldn’t push it.  I would have felt even more fantastic if it wasn’t the day after a Rebif shot.  I’ve decided that my Rebif side effects are even more annoying now that I know how good I can feel.  Rebif side effect on an already worn-out me were annoying, but they are far, far more annoying on the new me!  Although I take Aleve before my shot, when I stay up too long after my shot, I get the chills, my teeth chatter, and I feel awful.  This was the case Saturday night.  I’m so used to my fatigue sending me to bed early and have basically forgotten what the signs of “normal” tired feel like.  I did my shot at my regular time, but was so awake that I stayed up until 11:30.  Then I was suddenly nauseous (that was a new thing) and had the chills!  Whoops.  Note to self: ensure to go to bed within 1.5 hours of doing the Rebif shot.  I was nauseous again in the morning in addition to my normal fever of around 100 degrees and feeling achy and worn out.  Post-angioplasty is the first time I’ve ever had nausea as a side effect.  Lovely.

Okay, enough venting about Rebif and back to how great I feel otherwise.  Since angioplasty, I’ve had much more energy, my hand and arm strength have improved, my appetite has significantly decreased, and my sense of smell is far better than it’s been in years (yes, I know, that’s strange!)  Don’t get me wrong, I still get tired.  I was yawning away this afternoon.  I was hoping that my incessant yawning would go away after angioplasty, but it hasn’t.  It’s decreased, especially the first couple of days, but it’s apparently not gone.  I’m trying not to read anything into that!

One of the best things is that my stress is gone.  I’ve been feeling some level of stress since I first found out about CCSVI.  First I couldn’t wait to find out what my veins looked like.  This past April I finally got that answer.  Then I was stressed about finding someone to fix them.  Now that they are fixed, the stress is gone!  Sure, I’m a little worried about when/if they are going to close again, but for now I am really enjoying my victory.

I was quite interested to see how my neurologists were going to react when I told them I had angioplasty.  I know neither of them is on board.  Today was my six-month check up with Dr. Generalist (my local neuro.)  As I was sitting down in his office he asked me how I was feeling and if anything was new.  I opened with, “I had my veins fixed,” and he looked at me curiously.  I went on to tell him the story and about how great I was feeling.  Much to my surprise, he didn’t have a negative reaction.  He actually seemed interested.  I was his first patient who was persistent enough to not only do the research, but to do something about it and he was impressed by that.  I don’t think he’ll be sending patients off for angioplasty any time soon, but I think he’s going to be open minded and follow the research and how I’m doing.  I can live with that.

He also gave me a tip about managing Rebif side effects.  I’ve only been taking 1 Aleve (220mg) before a shot.  He said to try 2 Aleve one hour before a shot and to take another Aleve if I’m up in the middle of the night (which of course I am because I drink so much water before a shot that I have to pee by 4 a.m.!)  I’ll let you know if the extra Aleve helps at all.  Since he seemed to be in an open-minded mood, I decided to push it and asked about LDN.  I got the same response I got from Dr. Specialist — some seem to do well on it, but there’s no scientific proof, so I’m not on board with prescribing it.  Oh well.  One battle at a time.

August 1, 2010

CCSVI – Day After Angioplasty

Filed under: Uncategorized — by mseds @ 8:08 pm
Tags: , , , ,

Yesterday, Day 1 after angioplasty, was another great day.  For once I was not the most tired person in the house.  In fact, I was the only one who didn’t nap!  The down side of no fatigue is that I stayed up way too late.  I need to learn to recognize normal signs of being tired.  I did my Rebif shot around 9 p.m., which was a little earlier than normal.  I was wide awake, so I stayed downstairs and caught up on some TV.  Around 11:30 I started feeling sick.  I was freezing cold and nauseous.  I had taken Aleve as I always do before my shot, but I guess I usually go to bed far before I’d feel significant side-effects.  So, lesson learned.  I must make sure that I go to sleep within an hour and a half of doing my shot, even if I’m not tired.

Otherwise things were going well.  I still had some pain in the area of the left jugular, but not as bad as the day angioplasty was done.  I had slight tenderness at the insertion site, but I didn’t really notice it unless I touched the area or something pressed against it.  Obviously fatigue wasn’t a problem!  Not only did I not nap, but I walked around the mall for a while, tried on clothing, and still wasn’t tired.  I’m enjoying the new me.  I feel like the clock has been turned back about 10 years!

Blog at WordPress.com.