Information You Can Get Excited About

Subtitle: Cindy is a Miracle Worker

So a few weeks ago I wrote about how much thigh shots suck. Well, I finally got together with my “training” nurse, Cindy she introduced me to what I call “free style” shots.  That is, injections that do not use the auto injector provided but that your just stick in yourself.  Oh my gosh, s o m u c h   l e s s   p a i n f u l ! And less bruising.  Injections have become much less traumatic.

Now for the even better news / information.  Chris and I have attended a couple of seminars (sponsored by the maufacturer of Copaxone) to educate MS patients and their families on what is new in the research field, what clinical trials are currently recruiting, and Wednesday’s seminar on the importance of long term (drug) therapy.  This seminar on Wednesday was very encouraging.  The doctor is one of the best in the field, and is part of the University of Texas MS Clinic here in Houston.

Here are some of the highlights:

1. In the twelve year period studied with patients continuously on Copaxone (a small group), the average was less than one relapse every five years.  Seriously, that almost made me cry.

2. In the same group, over twelve years, only 8 percent of patients progressed to a point where they have problems walking. Eight percent.  My doc has already said that the goal is that I never lose the ability to walk.  That is a goal I can embrace and with those numbers, seems truly achievable.

3. It appears that the drug may actually activate central nervous system repair – not just slowing or stopping the progress of the disease but actually repairing damage.  Now this is an area where the facts and evience are not all in, but just the prospect is exciting.

(BTW, the study’s are mostly ten and twelve year studies because that is how long the drugs have been available on the market.)

So that is what I learned this week. As if I needed more motivation (which I do not) to stay drug compliant, I now have all I need to get over my “ouch that hurt” pity party for me.

PS. They had a motivational speaker at the end, who encouraged us to continue to follow our dreams.  His anecdotes made me think of a couple of my favorite memories of Dad.  When Chris and I got engaged, his reaction was: 1. I’m so happy for you; 2. I’ve got to get my crutches out and practice; and, 3. How am I going to pay for this?.  That was so my dad.  And I loved him for it. And even after years of MS wearing him down, we did dance at my wedding (even if unintentionally) and it is one of my happiest memories .ever.

Neuro Check

Sorry for the super short post but a brief update is in order.

I had my three month neuro check today, post diagnosis and I passed with flying colors.  All my motor skills are a-okay, vision is 20/20.  He is so comfortable with where I am that we will not do repeat tests until the one year mark and I don’t need to see him until December.

Yippie!

We also finished our foster to adopt classes this weekend and passed the fire marshal home inspection this morning.  Home study here we come.

How is that for three beautiful things?

Addendum: Haven’t seen Cindy yet – will soon though, and am just swapping spots until then.  The Doc was sympathetic and asked good questions, but the nurses really are the shot experts so he deferred to her on that!

No tears Tuesday! So I got a bit bold, decided to do my left thigh one more time, while trying to apply some logic to my approach (basically same approach as the arms, which work so well and have lots of the same mechanics as legs).  20 minutes out I am happy to say, no tears, same minimal fleeting pain as the rest of my shot spots!!  Will still consult with Cindy, but progress has been made

What a Difference One Day Makes

It’s funny that I posted relentlessly optimistic yesterday.  Well, not funny, ironic maybe?  I went to bed in tears last night.  I do that a lot on Tuesdays and Wednesdays.  Those are my thigh shot nights – and they suck.

We’ve never had great thighs in the family.  But in this case, my extra fat layer should be a good thing – the shots go in best in places where you can pinch up a couple inches of fat.  My thighs ought to be excellent candidates.  But for whatever reason, over the last three weeks, the shot spots puff unusually, then they get a raised hard spot overnight, ranging from golf ball to grapefruit size.  It only actually hurts for a few minutes but it is ugly and bruises.  And it is not supposed to work this way.  None of my other shot spots do this.  So I get frustrated, and mad.  Since I’m a bit of a perfectionist, my inability to get this shot spot “right” is pissing me off.  I hate this stupid disease.

And though I’ve never looked great in a bathing suit, this is going to make the Wednesday play date at the pool with my girlfriends all the more difficult to actually get me in my suit in public.  One bright spot – never loved my freckles so much – you can never tell where my arm shots go cause they are well camouflaged (and nobody but Chris sees my hips and my belly).

In case you are wondering, those are the seven shot spots – thighs, upper arm (fleshy/tricep side), hips (think pants pockets), and stomach.  One spot for each day of the week is the rotation. The spot I was most afraid of was my stomach.  Oddly, that is actually my favorite spot – rarely hurts and plenty of jelly roll / muffin top to absorb the needle. I have a special auto injector which lets me set the needle depth.  Its actually a very well thought out plan and once you get used to it, it’s pretty easy.

Update: I talked to the nurse who trained me (Cindy) this afternoon.  We’re going to get together next week – probably Tuesday – to do it together so we can figure out where the thigh is going wrong.  Cindy says crying should not be part of the process! (BTW, when she first trained me, she asked which shot I was least inclined to [stomach] and we did that one together – smart lady.)