Friday, May 2, 2014

It Could be Worse...

When we had severe weather in Central Alabama this week, many people asked our local weatherman, "Will it be as bad as April 27th?" (April 27, 2011 was a horrible day for Alabama. Tornado outbreaks took so many lives and wreaked havoc on the state.) His response back was, "I don't think we will see such a severe outbreak as April 27th, but if you are in the path and under the gun of a tornado, it will be your April 27th."

Think about that for a second. When trying to compare two weather events, whether they compare in severity or outlook, the impact they have on those directly impacted is the same. Usually, the result is devastation and disarray.

We are moving into our 5th month since our official diagnosis. I know... 5 months into a life long journey makes it seem as if we haven't taken our feet off of the starting line.

In the past 4 months, there have often been times when people have said the following:

"It could be worse, you could have _______________." (Insert another condition/inconvenience here.)

 I know people mean well and are trying to "lift us up by looking on the bright side," but having MS is our April 27th. Saying that having another condition could be worse is really the same as down playing having Multiple Sclerosis or saying that Multiple Sclerosis is not as "legit" as other diseases/conditions.

Perspective: Josh's immune system is attacking his nervous system. Basically, his immune system is in a fight with his brain and spine. There is no cure to stop this. We can only send in weapons (Tecfidera, Vitamin D, Prayer) and hope that it slows down the progression and helps to prevent the relapses. There is no repairing the damage, there is no stopping the attacking. At this point, what is done is done. Seems like a legit "April 27th", right?

One of the hardest things for people to comprehend about MS is that is usually looks "normal" and a lot of the symptoms are more internal vs. being seen from the outside. I even forget this. When Josh has to tie a tie, I  handle buttoning the little buttons. I forget that he still has slight tingling in his fingertips on one of his hands. It doesn't impact everyday life, but it is there.

I think it is important for people to try to remember that just because MS may not "look" as severe as other conditions/diseases, it is some one's April 27th. They are in the path of it's destruction, and are fighting like heck to try to control it.

Anabelle's parent conference went great. There are several areas in which she needs to improve. The areas are more in the self-control categories. Josh and I could not agree more with the report. She is 5 and is learning to control her emotions and reactions. We are working on this at home. Hopefully, she will continue to improve in this area. The one that made me giggle was the- Needs Improvement: Table Manners. Kids are gross, and kids eat really gross. There have been times when I have caught Anabelle eating ice cream with a spoon in her right hand but using her left hand to scoop the ice cream out of the bowl. Again, couldn't agree more with the needs improvement in table manners. Her preschool graduation is coming up on the 15th. She is pumped about her part. (She is Rapunzel.) Her teacher hinted that she has no problem prancing around the stage.

The MS Leadership Class of Birmingham reception/dinner is coming up, too. I have actually secured our babysitter for that night. I can't believe I remembered to do this 2 weeks in advance! Go Mama!

I am still working on Josh for his story. In a previous life (7 years ago), he wrote for the newspaper. He is a fabulous writer, and I know he cringes when he reads errors in my blog. I admit that I write too fast and often don't proofread enough. Point is, whatever he writes will be fabulous. He will basically take a depressing story about being diagnosed with MS and make it intriguing. Just wait-

Happy Friday!

Lori

3 comments:

  1. Hi Lori, I'm from Alabama and I have MS. I see that you are from Mississippi. What part? You and Josh are lucky to have each other, and the MS will make you stronger as a couple. Keep this in mind always: there WILL be a cure so just hold on, there WILL be a way to repair the damage, just hold on. New medicines are being developed as we speak/type (Teccfidera) to help you...hold on. HOLD ON.

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  2. Hi! Thank you for your comment... I need to remember and it was nice to be reminded to have faith in a cure and more medicine to help fight MS!

    I grew up in a Delta town, Clarksdale, MS. It is about an hour south of Memphis. We have been in Alabama for a little of 3 years.

    Thanks for reading the blog! Let me know if you blog- I would love to follow!

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  3. I have to echo Estizer's sentiment. There is *so* much going on in MS research now -- and the fact that your hubby's able to be on a pill instead of doing daily injections is a perfect example of how things are progressing well for us.

    My friend Katherine (who was diagnosed the same week as I was) likes to say, "There's never been a better time to have MS." We both giggle about this, of course, because there is *never* a good time to have MS, but at least we're dealing with it in a century where there's been positive movement towards understanding it.

    I'm really enjoying your blog! So glad you chose to comment on mine. <3

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