Monday, August 25, 2014

A tiny nap wouldn't be so bad...

Been a total battle lately. Health-wise I am what you would consider "a picture of good health". My MS is hanging on great! In "MS" circle talk, anyway.... Do we have a circle? Communities, Yes! But actual an circle? I'll continue...
 I have been trying to exercise every day. I set an alarm and say I'll exercise then! Only to hit snooze and tell myself it's a better idea to do it after work, less likely to injure myself! The work day ends and driving myself home seems to be the actual accomplishment. I actually feel relieved I made it into the driveway without adding an insurance claim to the route. Not because I'm a bad driver (reserve all comments- not that I really get any in the blog world- wonder why that is?) Anyway... I make it, and proceed to the house! With the Florida heat it has been tough this year. Seeking A/C shelter and rest is about the quickest move I'm making. AND my shoulder has been this constant source of pain since November but really kicked it into high gear in January. I mean really, are you suppose to be in pain just sleeping? Totally wrong!!! So I have spent much of my time going back and forth to Dr.s and physical therapy trying to get some kind of relief. My favorite statement... " well, you are already taking... (a medication FOR treating [name something associated with my MS] and that's a pretty high dose" Really? No kidding! I take that EVERY DAY because otherwise I wouldn't walked in here. I have taken it in climbing steps now since I was dx in 2004 [10 years mathematicians!]. Do you Mr. Medical genius know what happens to a person after several years of taking something? Yep, that's right! It doesn't work! Heck I took something that straight had me looking at throwing myself straight down a flight of stairs. I totally see how Robin Williams "happened". Very sad! So yeah, today, right now, this very minute, when asked on a form to describe my "health", I'm good. Ask me this afternoon, when my drugs have worn off and I have to drive home, and my daughter wants to do something "sports" related, and my husband thinks dinner should be on the table cause I managed to get home first, and my son needs my time for school (its open house after all), and the dogs are upset cause I am ignoring them, and the iguanas & bearded dragons are pacing because I walked into the room but didn't give the "proper" love the wanted (and they probably need fed too)... sure... I'm good. By neurology measures. No new lesions. But I am exhausted! So what measures should we go by when people ask?

We live in a world where its "weak" to be anything but "ok" or "good". And I am, health-wise. I am very grateful. I just think, there's nothing wrong with wanting a nap!

Saturday, August 23, 2014

Tired, hot- tired of being hot!

I love when people talk about "hot flashes". Flashes. As in a starting point and an ending point. 
For some the time lasts a lot longer than they would like, but seriously, the word end... Ah, my word is basically avoid.

Avoid getting hot. Meaning internally hot. Hormonaly I still have a little plumbing (not much) that should help with what most people associate "hot flashes" with. But with my MS, my "hot" issues come from a deeper underlining issue.

Not truly regulating temperature. Have you ever seen someone working out side for a few moments just dripping with sweat? Yeah, that's not me. I can run a 5k and look like I just stepped out of a meeting that didn't go my way- my face is red, that's it. All my "heat" just stays in my body. Creating a boil affect, often with a headache/miagrane as the grand finale. Fans, A/C, ice packs, and a dark room become my retreat. 

My son went to take care of the lawn this morning. He had asked about weekend plans, I went out to see how things were going... He was dripping wet... I went in and got him a drink. Went out to see if I could work on my flower bed, and 5 minutes later I was back inside. It was way too hot. My dogs rushed me... Time to lay down! Rest! Yep.. Rest!

Monday, August 18, 2014

Summer doesn't end... and that's okay, sometimes

When I moved to Florida from Ohio in March of 2001, I left a cold snap that had left a dusting of white stuff on the ground. My son was wearing a winter jacket, I wore a sweatshirt. Finding out in 2004, after a bout of optic neuritis I had MS "heat" was not going to be my friend, and cold might not be either, I had to laugh.

I left Ohio, and moved to Florida... Hmmm... I knew the cold didn't suit me. It literally hurt and each year that would go by seemed for some reason to get worst. Little did I know my brain was a ticking time bomb.

Now, with this new "heat" thing, part of me laughed, where did I go that didn't have A/C? Oh, yeah, the ball field. I was coaching boys baseball. And my husband was coaching girls softball. I am totally aware of the backwards irony, but it worked for us.  We lived at the field, and that part of my life never stopped. It just changed.

I had a 2 year old that thought that the field was her playground, so keeping her off became a more of a balancing act the first year. I think I promised more "stuff" that year than I had Erik's entire life. Liz was 2 I figured she wouldn't remember... little did I know that I would end up with a child that would keep up for any "MS" fog I ever had.

It's 10 years later and the ball field has never stopped being apart of our lives. And neither has summer.

August is where it normally starts getting cool in most of the country. Its going to be in the 90's today with a feels like temperature in 100's... That isn't cooler.

Liz tried-out with an elite softball team this past Saturday, in the heat of course, and I stayed hydrated. I've learned.

The years have taught me several things...
August happens 
Summer doesn't really end in Florida, it only shifts
...and that is okay...
Missing out on life is NEVER okay
Adjusting to the changes of my MS is necessary to being the very best ME
I am beyond blessed!